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Fibrillary Glomerulonephritis Questions

Updated on January 13, 2011
Glomerular Basement showing FGN
Glomerular Basement showing FGN

Symptoms-Diagnosis

Somewhere around 2 ½ years ago, while having a physical done, it was explained to me by my primary care physician (pcp) that there was blood showing up in my urine for some reason.  This phenomenon is called hematuria. Though I didn’t know what that meant at the time, and still am not 100% sure, I am learning as I go.  A couple of other urine tests were done in order to rule out a bladder, UTI, or kidney infection.  When the urine tests showed nothing, I was then sent to have an I.V.P. done. An I.V.P. involves having an I.V. put in and X-rays being done of the entire urinary system.  Once the results of that came back and showed no problems, I was then sent to a urologist. The urologist had another couple of tests done, lots of blood and urine work, and then he did a cystoscopy/bladder scope.

 

 

What is Cystoscopy (Bladder Scope)?

Cystoscopy is a diagnostic test done so that the surgeon can see directly into the lower urinary tract (bladder and urethra). A lighted, tubular telescope-like instrument called a cystoscope is placed into the bladder through the urethra. This test is done for many reasons. It is to look for problems associated with bleeding or pain. It can be done to look for obstruction of the urinary tract or to look for stones. It can also be used to detect problems with the lining of the bladder. Water flows through the cystoscope so the surgeon can see the bladder, urethra and the insertion of the ureters into the bladder. X-rays may be done along with cystoscopy to look for different problems with the ureter or kidney.

Nothing was found during the cystoscopy, and the urologist wasn’t alarmed. He explained to me that some people just plain develop hematuria for no reason, and that we would just keep an eye on it. RIGHT.

I.V.P.- 1

I.V.P. done with dye to check for deformities or problems.
I.V.P. done with dye to check for deformities or problems.
One is done without a full bladder, then one with a full bladder.
One is done without a full bladder, then one with a full bladder.

Nothing Found Here

 

Nothing was found during the cystoscopy, and the urologist wasn’t alarmed. He explained to me that some people just plain develop hematuria for no reason, and that we would just keep an eye on it. RIGHT.

 

Prior to all of that, I really hadn’t had any problems warranting concern about any kidney problems. I hadn’t had any pain or discomfort, and afterwards, for about 8 or 9 mo. I still hadn’t. Since the new ostomy surgery, I do have some problems with holding my urine, but not on a painful level of any kind, unless they are due to adhesions. (An adhesion is a band of scar tissue that binds 2 parts of your tissue together. They should remain separate. Adhesions may appear as thin sheets of tissue similar to plastic wrap or as thick fibrous bands). Then, slowly, I began aching on a regular basis in my rib cage area. My P.C.P. again tested for hematuria and found my levels to be a little higher. He then sent me to a nephrologist. This is all close to 2 years from the original finding.

 

 

 

Laproscopic Transplant

Laproscopic surgery is found to be the best for patients.
Laproscopic surgery is found to be the best for patients.

Finally/ So Far


The nephrologist explained to me that it is NEVER okay to just let hematuria go without finding out why you have it. He told me that he had 3 or 4 tests he would do, and that if he found nothing there I should really have a kidney biopsy done. After about 2 weeks the biopsy was scheduled. I will not lie, it is a painful procedure, and it only took about 4 days for him to call me back into his office. When he first walked into the office he flat out told me things weren’t good. He told me that I had Fibrillary GN and that he was sending me to a specialist at Ohio State. I don’t think I heard much past the fact that “things aren’t good”. If he did explain it to me, I just didn’t hear it. So, having been a former nursing student, I went straight home and got on the internet. I had also emailed my “heard” results to my L.P.N. sister.

One of the things I remembered from my biology class was that one of the things your kidneys consist of are glomeruli. The glomeruli are filters within the kidneys. I knew only at that time that there was a problem with the filtering system in my kidneys.

*****Fibrillary glomerulonephritis (FibGN) is a rare cause of progressive renal dysfunction. The majority of patients who develop the disease require dialysis within a few years.

*****FibGN occurs in approximately 1% of renal biopsies  and  It is more common in caucasians with a peak incidence between the fifth and the sixth decades of life .

8)Rosenstock, JL; Markowitz, GS; Valeri, AM; Sacchi, G; Appel, GB; D'Agati, VD. Fibrillary and immunotactoid glomerulonephritis: Distinct entities with different clinical and pathological features. Kidney Int. 2003;63:1450–1461. doi: 10.1046/j.1523-1755.2003.00853.x. [PubMed]

11) Iskandar, SS; Falk, RJ; Jennette, JC. Clinical and pathologic features of fibrillary glomerulonephritis. Kidney Int. 1992;42:1401–1407. [PubMed]

12) Hvala, A; Ferluga, D; Vizjak, A; Koselj-Kajtna, M. Fibrillary noncongophilic renal and extrarenal deposits: a report of 10 cases. Ultrastruct Pathol. 2003;27:341–347. [PubMed]

****(2)Fibrillary Glomerulonephritis (GN)

· What is Fibrillary GN? · Who gets FIBRILLARY GN? · What are the Symptoms? · What Types of Tests Detect FIBRILLARY GN? · How is it Treated? · Clinical Trials

What is Fibrillary GN?

Fibrillary GN is a disease which affects the millions of filtering units that make up the kidney. These filtering units are called glomeruli. Each individual glomerulus is composed of multiple layers of straining material (endothelium, basement membrane, popdocyte foot processes) which assure only select components of the blood pass from the blood vessel walls (capillary lumen) into the urine. In this condition, for unknown reasons, the body produces a large volume of unusual proteins. These proteins enter the glomeruli (or they may be produced within the glomeruli), but because of their unusual nature become trapped in the straining layers, disrupting filtration. In some instances these proteins activate the immune system causing inflammation in these delicate structures. Over time the inflammation can damage the layers of the filters, as well as adjacent structures, allowing large amounts of proteins to spill into the urine. As the inflammation progresses filtering units are damaged beyond repair and replaced by scar tissue. Ultimately, with the loss of enough glomeruli, the kidneys lose the ability to filter the blood, a condition known as end-stage kidney disease.

Who gets Fibrillary GN?

Fibrillary GN has been reported in those age 10 to 89 and appears to affects Caucasions and a slightly higher rate. Because we do not know exactly what causes the disease, we can not predict who will develop it. Based on published reports, it appears there may be an association of this disease with conditions of immune system dysfunction, such as lupus, or those causing chronic immune system activation, such as Hepatitis C.


What are the symptoms?

Early on Fibrillary GN primarily affects the individual filtering units of the kidney. The symptoms that develop are linked to this initial sight of damage, and the subsequent passage of blood components into the urine. People commonly present with swelling in their legs or feet and foamy urine,due to a significant loss of protein in the urine (proteinuria). However, patients often develop proteinuria without swelling, and first become aware of their condition with the detection of proteinuria on routine urinalysis performed by their primary care doctor. Red blood cells may pass through the filters into the urine as well, though they are usually too few in number to be seen by the naked eye (microscopic hematuria). Blood identified by urinalysis should be confirmed by microscopic evaluation of the urine by a physician to be certain the blood identified is not from another source (ex. the bladder).

As damage to the kidney progresses, individual filtering units are lost, and as a consequence many patients develop high blood pressure, commonly requiring multiple medications for control. Patients may have difficulty managing their phosphorus balance (phosphorus is excreted by the kidney) and often suffer from anemia. This occurs as the kidney can no longer secrete a substance called erythropoietin, a hormone responsible for stimulating bone marrow production of red blood cells. Unfortunately, Fibrillary GN tends to be a progressive disease ultimately leading to loss of kidney function and the need for dialysis or kidney transplant. Symptoms of advanced kidney failure include nausea, fatigue, confusion, loss of appetite, funny taste in the mouth, itching, shortness of breath, or heart palpitations. The rate of decline is variable ranging from months to several years and should be followed closely by your doctor.

What Types of Tests Detect Fibrillary GN?

Early evidence of kidney damage from Fibrillary GN may be detected on routine lab tests. For example, urinalysis may identify protein or blood loss in the urine. Microscopic exam of the urine can identify other evidence of kidney involvement such as red blood cells that have passed through the kidney filters (glomeruli). Later in the course of the disease serum creatinine, a marker of kidney function, can elevate indicating loss of functioning glomeruli. However, as there are many conditions that can damage the glomeruli, the above findings are non-specific for Fibrillary GN. Ultimately, a definitive diagnosis of Fibrillary GN must be made by microscopic examination of kidney tissue obtained by kidney biopsy. Examination of the tissue by light-microscopy may show evidence of protein build up in the glomeruli, but electron-microscopy is ultimately needed to determine the precise nature of the captured proteins. As part of the evaluation a number of blood tests are often done to evaluate for other renal diseases (ex. HIV or Multiple Myeloma) or conditions associated with Fibrillary GN (ex. LUPUS or Hepatitis C).

What are the Treatment Options?

There is no proven effective therapy for Fibrillary GN at present, though many therapies have been attempted with limited success. Treatments used in the past have included immune modulating agents, alone or in combination, such as steroids, cyclophosphamide, and cyclosporine. In very specific cases, physicians have also tried plasmapheresis, a procedure in which the blood is filtered outside the body (like dialysis) in an attempt to remove proteins.The treatment course must ultimately be determined after testing for associated conditions, such as Lupus or Hepatitis, evaluation of kidney function, and a detailed review of the kidney biopsy findings. Use of immunomodulating agents must weigh the potential benefit of disease response versus the known risks of immune suppression, such as susceptibility to infection.

Clinical Trials

http://www.clinicaltrials.gov

(2)http://www.unckidneycenter.org/kidneyhealthlibrary/fibrillarygn.html


Things immediately felt like I had been given a death sentence, though I am learning new things every day. It is all so confusing to me. Whenever I try to look up information on this disease, it never comes alone, it usually is paired with a couple other things. None of these other things were explained to me though. When I get back to O.S.U. hospital I will get more details about my actual condition.

What I do recall about my diagnosis is that I will eventually need a kidney transplant. These little fibers will begin to grow together in my kidneys, and my kidneys will no longer filter and function as they should. Something else I keep finding is that proteinuria usually preceeds hematuria. But to date, I am not showing, nor have shown, any signs of proteinuria. What this means is that the protein in the body isn’t being filtered by the kidneys as it should be. I am so confused.

Another thing I remember is the specialist asking me if I had ever had Hepatitis C or if I have Lupus. It seems that FGN is common in people who have or have had an autoimmune type disease. It usually occurs when the immune system has been compromised. Although I suffered a horrible bout with MRSA about 5 years ago from a shot in my knee, that fired through my blood and lungs, they are telling me that it didn’t have anything to do with it. ?? So I am constantly searching for further information about fibrillary glomerulonephritis. I am anxious to get back to the specialist and ask further questions, and maybe even get into some kind of research group.

My specialist explained to me that sometime in the near future I would inevitably be put on dialysis, and be in need of a kidney transplant. When, we’re not sure, as my disease is mysteriously progressing slower than expected. That’s okay with me though. Having a large family, you would think I would have options out there for a kidney transplant. But all but one of my siblings have children and even grandchildren of their own. I would never ask any of them to donate a kidney, simply because one of their descendants may need one some day. So I am left with a brother to ask. Unbeknownst to me, my siblings had secretly and lovingly discussed this already. And one day I got an email forwarded from my sister about the conversation, with my brother offering to do anything he could for me. Right now I am thinking about going ahead and having tissue match testing done, so that if or when the time comes, we will know. If my brother isn’t a match, I will be put on a kidney transplant list. I will stay on dialysis until a donor is found.

As of now I am seeing little signs of related symptoms. The spider veins on my face. The Hypersensitivity Vasculitis (Leukocytoclastic Vasculitis): Multimedia - eMedicine spread over small parts of my body. The waiting is maddening in a way. You wonder, thinking all the time. I had an appointment with my nephrologist (local) back in Oct. and cancelled it. I don’t know why. I have some urology tests that need done before I go though. And just finally today I called and rescheduled that appointment. I will go to town tomorrow and have the urine tests done. They are looking for proteinuria and any other sign that my kidneys have started to purge protein. I will keep an eye on my blood pressure. My legs and hands have been swelling with fluid occasionally, but never when I go to the Dr. So I am taking pictures of it so that he knows what I have been going through. I have been trying to find a support group related to FGN but have had no real luck. I would actually like to find a local research facility. With my case being “unusual” I would like to really know what is going on. I don’t want to be blown away one day with the possibility of living on dialysis for years. I’m too young for that.

I would love to have some feedback from anyone who is suffering from this disease, or knows someone who has. I would like to be prepared for kidney dialysis when the time comes. My girls and I are going to take a trip this summer, after we get a bunch of work done on our house. I want to have something wonderfully memorable to think about once I’m down. And I know I will be down for awhile at some point. It is going to be strange to have to deal with high blood pressure after having had a low B.P. for so many years. This hub is a little personal I know, but I felt the need to put out there what I have been able to find and hope someone who is educated with such things to offer further information and support.

Thanks~ Anita **************************************************************************************************

TI Fibrillary glomerulonephritis: an entity with unusual immunofluorescence features. AU Alpers CE; Rennke HG; Hopper J Jr; Biava CG SO Kidney Int 1987 Mar;31(3):781-9. We describe seven patients with renal biopsy findings of mild glomerular abnormalities on light microscopy but with prominent accumulation of randomly-arranged fibrillar material in the mesangium and capillary walls on electron microscopy. This material differed from amyloid in that fibrils were thicker (diameter range 10 to 19.5 nm) and did not stain with Congo Red. In six of seven cases fluorescence microscopy showed prominent staining for IgG and kappa light chain in mesangium and glomerular capillary walls; in three cases weak lambda chain staining was also present. Stains for IgA, IgM, and lambda chain were otherwise negative. One biopsy showed equal staining for kappa and lambda light chains, but not for heavy chain components. Clinical findings were heterogeneous. Patients presented with features of nephritis and/or nephrotic syndrome. No patient had an associated lymphoplasmacytic disorder, paraproteinemia, or other evidence of systemic disease. On follow-up ranging from five months to 12 years, all patients are still alive; six progressed to end-stage renal disease requiring dialysis. One patient developed recurrent disease in a renal allograft five years after transplantation. Non-amyloidotic fibrillary glomerulonephritis is an ultrastructurally distinct entity of undetermined etiology. The apparent association with monoclonal IgG and kappa light chain deposition observed in this series deserves further study. PMID 3106698


Vitamin D Deficiency Items Found

Vitamin D requirements increase with age, while the ability of skin to convert 7-dehydrocholesterol to pre-vitamin D3 decreases. In addition the ability of the kidneys to convert calcidiol to its active form also decreases with age, prompting the need for increased vitamin D supplementation in elderly individuals.

Hypovitaminosis D is a deficiency of Vitamin D. It can result from: inadequate intake coupled with inadequate sunlight exposure (in particular sunlight with adequate ultra violet B rays), disorders that limit its absorption, conditions that impair conversion of vitamin D into active metabolites, such as liver or kidney disorders, or, rarely, by a number of hereditary disorders. Deficiency results in impaired bone mineralization, and leads to bone softening diseases, rickets in children and osteomalacia in adults, and contributes to osteoporosis.

So possibly, this deficiency comes from our kidney's ability to process the vitamin D. I don't think this may be a cause of our FGN, but certainly an effect!
Just one more thing for us to try to stay on top of.

I'll add more as I find it folks.



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    • profile image

      Josh 2 years ago

      I came across this posting while researching FGN. My mother was just diagnosed with this and I am a little overwhelmed trying to figure out what is going on. Can you give me some direction in where I should look for information and support? Thank you in advance. jmcobbs@gmail.com

    • profile image

      GlennGay 2 years ago

      After 5 years with same drs office I changed doctors. This doctor tells me she is going to try to get me in some trial programs at Mayo Clinic. I'm so tired of this wait and see attitude. I'm proactive with my health and can't stand this waiting attitude.

    • profile image

      Roger 2 years ago

      Hi Anita & everyone, my son Kashi is only 17 yrs old & had been diagnosed with glomerulonephritis back in 2007 & its affecting both kidneys. He's been on BP meds but not much else & medics still don't know the what the trigger is or how to treat it. They want to start him on steroids to try to slow the kidney degradation, but we're very reluctant because after 6 months, the adrenal gland may not recover from steroid intake & if he gets a common cold or something similar, he will have to resume taking the steroids, which appear to cause more problems & side-effects, whilst the kidneys continue to get worse; he'll most likely end-up needing a double kidney transplant. I am so worried for him. We live in London, UK but are willing to travel abroad to see other specialists, in the hope for a better course of treatment or resources. Having read the posts on here, I was wondering if someone has either heard of or could recommend a specialist or organization that has a world renowned reputation for dealing with this condition. Any recommendations would be greatly welcomed & appreciated. Thanking you all in advance, kind regards & stay strong. Rog Williams

    • profile image

      Mandy 3 years ago

      Hi, thank you for posting a lot of useful information. My mom has Fib GN for about 7 yrs now. She was at stage 3 renal disease, it might change bc she is at the hospital having some problems. I have been trying to do some research to fond out if this causes hemoglobin levels to become so low. She received 2 blood transfusions w/ in 3 days. Her nephro hasn't seen her yet.

      I am not sure if it is hereditary, I have been trying to do research on that also. I have a problem with my kidneys. I haven't had a biopsy done. My acid levels are high, O2 levels low, and potassium level low. The nephro calls isn't sure what is the problem. Chlorine shows up in my urine test & something else.

      Right now I am more focused on my mom, she is 74 years old. Ty, again. Best wishes to everyone!

    • profile image

      Stefc12 4 years ago

      My husband has FGN and is not doing very well, has a creatinine of 3.0 with large amts of proteinuria. He is taking cellcept and pulsing doses of methylprednisolone. He is on transplant list at Mass General

    • anitariley65 profile image
      Author

      anitariley65 4 years ago from Little Town Ohio

      So sorry, I never get to come here. Hoping to get to read and respond in the next couple of weeks. And yes, do check out the facebook page.

      Anita

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      shortsa 5 years ago

      Thanks for the info about the facebook page. I will check that out. It is good to know that dialysis can help. I am currently helping my Mom figure out the food options that will help her keep her potasium down. I am glad that you are hanging in there.

    • csue99 profile image

      csue99 5 years ago from Dallas, TX

      Shortsa,

      Dialysis really helps. There is another page to try - facebook - http://www.facebook.com/groups/355521563763/ and you will get a quicker response to your questions. There are several people there currently on/in dialysis and some that have had a transplant. Great group of people that share their experiences.

      I am 62 and have had FGN for over 10 years. I am at a Stage 3 level but currently do not need dialysis so I can't really answer your questions. I have battled high potassium (and won) but it is not always easy. I have spent tons of hours online searching for things I can eat that won't cause me harm. It is an endless search.

    • profile image

      Shortsa 5 years ago

      My Mom was diagnosed with FGN about 5 weeks ago. She is 73 and is feeling really bad. Creatin levels are high and she is battling her potassium levels. Her doctor at the Mayo clinic prescribed ritaximub or ritaxin. Her insurance and medicare is denying the claim. Has anyone used this drug successfully for FGN? She is retaining a lot of water and is having terrible hives. I am really scared and want to figure out some relief. Also-do people have success with dialysis? I appreciate finding this site.

    • profile image

      optlwhspiz 5 years ago

      Заказ доставлен через месяц:-) 307!!! Всем советую! Эфект чудный:-) Респект администрации rastaopt.ru! Сайт 100% пусть и долго едет посылка, но оно того стоит! Всем свои советую только этот сайт!

    • profile image

      Helen 5 years ago

      Neph wants mt to get fistula I have opted for pd dialisys after all it's my choice. Saw a surgeon today at university in Cleveland will start the transplant process soon.

      Symptoms at 9% kidney function. Tired a lot, nausea so I need to be careful what I eat. No swelling yet thank god I'm already overweight! I'm sure I'll be on D come my next appointment by then hopefully my cath is installed. I don't want to be in hospital. Trying to do this on my terms! Blood pressure is out of control, and I find myself having a hard time sleeping even though I'm tired. I also get restless legs at night.

      I freaked out when the moment came to get ready for D after a few weeks I really feel stronger and I am trying to handle this my way! I plan on keeping working I currently work 40 plus hours we will just have to see how that goes. I'm going to SS next week once you have esrd you can sign up for Medicare I m lucky to have insurance however it may benefit me and my employer to sign up. I was diagnosed three years ago it appeared from my biopsy I had this a few years undiagnosed. I have idiopathic no known cause. Stay strong folks !

    • profile image

      trisha thompson 5 years ago

      I just saw my nephrologist today with no questions answered. And even worse, he is moving out of state and his partner and I don't communicate well. I am starting to feel like I am falling into a deep depression again and am trying not to for my daughter. I am always tired and feel like crap, for lack of a better feeling right now, and my doctor just looked at me. I am voicing my concerns and trying to have him understand how I am when he doesn't see ne for months at a time. All he had to say was that he didn't know what I expected him to say in return. I am at 30% which is way up from 17% a year ago and spilling more than 3000 grams of protein. I am on 4 blood pressure meds to no avail.

      Sorry for the rant but I felt I just needed to say something in the hopes that someone other than my wonderful husband might hear me. I hope someone else out there is feeling better than I am and things are going well for at least 1 person out there with fgn.

    • profile image

      Donny Oz 5 years ago

      Like all of us I was trying to find a positive about GFN and so far this hub is it,congratulations to all for being so brave and kind ,to be able to talk openly about this indiscriminate disease I was diagnosed about 2 1/2 years ago,My nephrologist seems to be up to date with all known meds,at this stage I only take BP meds, I have dropped lipitor for cholestorol as I felt that a side affect was cramping,he also has an open mind to alternate medicine,My GP also sent me to a MD who specialty is naturopathy,He has given me lots of hope to be able to fight this disease with natural therapies,I am on a salt free diet,no processed foods,filtered water,healthy food,lots of fruit loaded with antioxidants,lots of green veggies,I also take a lot of supplements like resveratrol,fish oil,vitamins to rebuild my immune system and strengthen cells(let me know if your interested) to many to mention plus a herbal tea,I know I might sound whacky to some but my results have been good and my Nephrologist says to just to keep doing the same as his aware that I have got no other choice, just got to keep positive,stress free,relax and try to stay happy,

    • csue99 profile image

      csue99 5 years ago from Dallas, TX

      Hi guys,

      My kidney function is maintaining although it did spike late last summer along with my potassium. Right now I'm trying to watch out for the potassium levels of all foods but was told that I should do this forever now even though my potassium levels are down.

      My doctor talked about me in one of his teaching classes, well it was really about FGN. With all the years experience in this practice, I am the only FGN patient they've ever had. They are all proud of me but it isn't me, it is my body that does whatever it does. I'm just along for the ride.

      I currently have multiple stress fractures in my left foot. It was 5 weeks before I found this out because I just thought that my gout or neuropathy issues were involved. I never thought that it could be something "normal". So I've had this now for about 9 weeks and still have at least 6 more weeks in a boot. Oh well.

    • profile image

      Ninnyx4 5 years ago

      Hey everyone. I haven't posted in a few months. Saw the nephrologist last month and the creatine level was at 1.9. I stay so tired and have no energy. I am still running microscopic blood in my urine and have a constant UTI. Seems like I'm on an antibiotic every other month. Now my PCP is worried about a secondary infection and has me on a strong antibiotic. Of all things, we were on a trip to see my very sick mother-in-law who was in ICU and we stayed in a very nice hotel. After the first night I woke up with 61 bed bug bites on my upper body and arms. After 1 1/2 days of misery we went to a walk in clinic and the doctor gave me a steroid shot and 5 each 50mg prednisone tablets. I have scratched and scratched and have horrible ugly sores and now the antibiotic for the infected places. Now I wonder about the long term effects of the steroids and if it will do damage to my kidneys. I don't see the nephrologist until next month.

    • profile image

      Trisha Thompson, Ripley, NY 5 years ago

      I have had this disease for 13 years now. I was diagnosed at the age of 16. My kidney fcn is currently 26 but it has been down to 16 and up to 32 in just the past year. I am glad that I am not the only frustrated, confused person with this rare, vague disease. I have seen 4 nephrologists over the years and have been to Cleveland clinic, Pittsburgh, and buffalo hospitals, and 3 biopsies. Only 1 successful biopsy though. I feels confused, frustrated, tired and lost. My doctor doesn't seems to hear and/or believe me that this disease is tiring my body out. It was nice to find this article and all the feedback from people. It is nice not to feel so alone. I have my family but after 13 years of this, they seem just as tired and confused by it as me. My doctor plain tells me he isn't sure what is going on but as long as I don't need dialysis(10% or lower for him), I am just supposed to ride it out. If anyone would like to talk or comment on anything please e-mail me at TTET9089@Yahoo.com.

    • profile image

      Kathy: Wales UK 5 years ago

      Hi Everyone

      I have not posted on here for a very long time. Have had FGN for about 8yrs. I'm still going, however my kidney function is 19 at this moment. I still stay positive about is all. I take each day as it comes, some up and some down. I have gone on the transplant reg. I will see how it go's. I don't know the medical terms, I just say to them hows it going Doc. I feel if I don't be like this I would have crumbled years ago, and thats not going to happen. So take care all you lovely people and take each appointment as it comes. God bless

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      Larry 5 years ago

      Bad news and good news. PD was going well for a while, but I developed a hernia for unknown reasons. PD was discontinued and a subclavian catheter installed on my neck again to re-start hemodialysis. The good news is that my wife is a perfect match for a transplant and more than likely the procedure will be done in March or April.

    • profile image

      westcoastdeedee7 5 years ago

      Helen,

      Sorry to hear things are not going well for you right now. Try to keep strong and positive. I'll keep you in my prayers.

      Still there, you were right- there are 3 types of FGN. Primary, Amyloid and I think idiopathic. I have Primary. The doctor in Portland said he had a lot of FGN patients that went beyond the 10 year mark before needing dialysis. That was a major relief for me. I'm going on 10 years now. FGN is caused by something autoimmune. All the major diseases were ruled out for me (Hep B/C, Lupus and cancer). The doctor said I probably would never find out which caused this. He also doesn't treat FGN because the medications are not focused on the kidneys and do too much damage to the other organs. I'm on a low protein diet now (75-85 gm/day). Maybe that will stop the increase of protein in my urine. I'll keep you informed.

      Maconham, how are things with you? You haven't said lately and I was concerned.

    • profile image

      Helen 5 years ago

      Hello Everyone

      I was diagnosed two years ago. The last 9 months my numbers have increased 1.7 to current 3.6 I was at my Primary for annual physical and he was shocked at my levels. I did feel the last time I was at the specialist that he was giving me the Holidays and probably be sending me for a fistula soon. My primary confirmed that Tuesday.

      Larry did they give you the choice of PD vs Hemo? Did you go to any support groups? I'm only 47 and really not ready for this change in my Life. I'm trying to stay strong for my husband and sons.

      Helen

    • profile image

      Larry 5 years ago

      Status update: I no longer need hemodialysis, Home PD has been a success. Neck catheter will be removed next Tuesday, God willing. :) Feeling much better now, strength is slowly coming back and legs are no longer swollen. PD is 4x a day, 2.5liters of 1.5% dextrose and 2.5 dextrose

    • maconham profile image

      maconham 5 years ago

      Peter,

      It must be the scotch!:)

      Bill

    • profile image

      Still here 5 years ago from Brisbane Queensland

      Bill

      After being feed B-----t for just on 10 years by doctors, like my previous posts, I decided to forget the medico's, to stop worry about what may happen and just spending my time with my family. I still maintain that as much as I have had a biopsy in 2003, which they said they confirmed I had FGN, I do not seem to have the same problems as the rest of the people on this post. I like my scotch, about 2 bottles a week!! I like my smokes, about 140 a week!! My BP stays at 140 over 100. So what an I doing so different to the rest of you??

      I just do not understand why I am so lucky with this, when many of you suffer so much. This is why I believe there is more than one strain.

      Peter

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      westcoastdeedee7 5 years ago

      Hello,

      My doctor thought something was wrong about 8-1/2 yrs ago when I had 2 back to back uti. I had protein in my urine both times and the doctor sent me to a nephrologist. A year prior to that I started spilling large amounts of blood in my urine. She sent me to a urologist who told me it was because I went through menopause and the acidic urine and lack of estrogen was causing my bladder to be irritated (boy was he wrong). I didn't have a kidney biopsy until a year ago. My nephrologist just thought I had glomulonephritis and was treating me for it. I went to another nephrologist for a totally different thing and he couldn't believe that I hadn't been biopsied. My doctor finally did it and I had both the glomulonephritis and FGN. FGN is my primary diagnosis. My creatinine has been under 2. My BUN has gone from normal to the high 40s. My GFR keeps bouncing around from greater than 60 down to 39. In the last month my protein/creatinine ratio went from double digits to 1 gram. I think it's my diovan doing it. My doctor cut it to half, then upped it by a quarter and then put me back on the full strength- 320 mg. I've been getting blood work done every week for the last 2 weeks. Already my BUN has gone up. I'll see what happens next week. My doctor has never treated anyone with FGN so I'm going next month to a doctor who has. I want to try and find out how my disease is progressing in relationship to everyone else's. They say you need dialysis in 5-10 years after the first symptoms. The blood in my urine was 9 to 9-1/2 yrs ago.

    • maconham profile image

      maconham 5 years ago

      Heather,

      FGN came out of left field for me, I had no idea that I had any kidney problems. I had been battling high blood pressure for about ten years, with the wrong doctor. Early last fall my BP had gotten up in the mid 200’s over 100 – 115 on a daily basis all while taking a half dozen pills per day to control it. I started becoming real weak, I couldn’t climb the stairs I normally took daily at work without pausing at each level to catch my breath. Then my previous doctors new partner removed all diuretics from my daily meds, in less than 48 hours my feet and legs had swelled to a size that I had never experienced before. I changed doctors at that point, thank God!

      My new doctor found notes from four years prior in my previous doctor’s records where a surgeon commented that my kidney function needed be looked at closer due to my lab reports from a previous surgery. She also noticed that half the BP meds that I had been on for some time were deadly to my kidneys. She changed all my meds and referred me to a Nephrologists, he performed some test including a kidney biopsy, and found FGN.

      Now, for the first time in ten years, my BP has been under control since last Dec. I was also placed on 200 mg per day of Cyclosporine last Dec which has kept my GFR between 20 and 26% all year. I still get tired easily, have bouts with muscle cramps and joint pain which appear to be from the side effects of Cyclosporine. My current doctors are great, they have gotten me on the inactive transplant list at GA Medical College and they keep a constant eye on all of my blood work for any changes.

      It still stinks that I have FGN, but good that I have a first class medical team supporting me.

      Peter, your thoughts that there may be more than one strain of FGN is interesting. I have also noticed how much different each of our situations have been. I had written it off to the treatment options and had wondered if it is Cyclosporine that has made my situation different, ???

      Bill

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      Still here 5 years ago from Brisbane Queensland

      Hi Heather

      With me, I thought it was a UTI and was treated as such.

      Peter

    • Cousinit profile image

      Cousinit 5 years ago

      Hi All, I've finally had the time to read this site from the beginning and just have one question. Did anyone get there diagnosis following a sudden episode of acute renal failure? That's what happened to me and I wondered if any of you had the same experience. I just started vomitting one morning, just fluid, and my GP ordered bloods on the spot, next thing I know I'm 3 days in hospital. It settled itself in about a month(creatanine levels) but protein and blood levels in urine won't go down. Biopsy did the rest. I just wondered as this might give me an idea where I might be at regarding progress. Best to you all. Heather.

    • Cousinit profile image

      Cousinit 5 years ago

      Hi Peter, your logic certainly makes sense. I hope I will be as lucky as you, I plan to be. I will have many questions for my Neph in three weeks as I was blindsided at the diagnosis and unable to think. Do you find fatigue is or has been a problem for you? As for the name cousinit; that was given to me years ago by my son's teenage friends when I appeared one Sunday morning just a little the worse for wear with my long red hair very untamed. Hence Cousin It, Keep well. Heather.

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      Still here 5 years ago from Brisbane Queensland

      Hi

      Larry, I understand the fluid problem, but not to the extent you are talking about. Hope it gets better for you.

      Cousinit (love the name), I have over the years asked why I have been able to live a normal life, yet others who suffer from FGN suffer so much. It is my opinion there are more than one strain, otherwise, why have I been so lucky up to date? Simple fact is, the medico's don't know and neither do we.

      My current meds are, Micardis 40mg ( this does make a difference to protein levels, Perindopril and Lercanidipine.

      Peter

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      Larry 5 years ago

      As a continuation of the above post. i feel physically much better now, but mentally I feel very depressed, it has been a substantial event in my life, involving a 180 degree pattern change. The clinic where my hemodilaysis is being done has scheduled an appointment with a psychiatrist to begin treatment for mental condition.

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      Larry 5 years ago

      Hello, I have not posted in awhile, but needless to say since my last post i went downhill. My GFR went from 39 to 23 and it got to 8 on the 24 of Oct. My legs were swollen beyond belief, I could barely walk and felt really bad, also I had an ammonia breath. I called my nephrologist and he said to go to the ER asap. To make a long story short a subclavian port was installed on my neck and emergency hemodialysis was initiated since i was almost dead from excess body fluids as well as enormous amounts of phosphor. I has not been a pleasant experience, but so far over 12 kilos of fluids have been extracted from my body as well as a lot of harmful substances from my blood. I have opted for Peritoneal dialysis and the procedure has been done. I will keep you posted. God Bless you all.

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      Cousinit 5 years ago

      Hi Still Here, great to see your post. I never thought I was the only Aussie I just couldn't find any others. I am so pleased to read how well you have been doing and it does give a lot of hope. Are you on any treatment regime? I do feel for you with the gout episode, it's a bummer! As for the "strains of FGN" have you been advised of that or is it a position you have come to? Sorry to quiz you but you have so much more experience with this and I needed more than anything to make this kind of contact; can feel very lonely sometimes. Wishing you well. Heather.

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      Still here 5 years ago from Brisbane Queensland

      Hi All

      First up, Cousinit, You are not the only Aussie here:)). Can't believe it's been 14 months since I did a post. I'm still doing OK, but out of the blue, I have Gout, never had it before and would prefer not to have it again. I have avoided the Neph for 6 months, but I know I need to go back for a check up. Anita, looking over the posts, once again, you have done a great job with this, giving people somewhere to talk to others in the same boat, wish I could put you up for a reward for services to the international community. Just to restate, I was told in 2003 to take any overseas trips I wanted to do by 2005, as my kidney functions would diminishing quickly. It's 2011, I have had this for perhaps 10 years. There is always hope and I still maintain, there is more than one strain of FGN. I will be back weekly to check how everyone is doing.

      Peter

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      Cousinit 5 years ago

      Hi everyone, I'm so glad to have found this hub. I was diagnosed with Fib gn in August and have had a really hard time finding more than just clinical info. I needed to talk to people who are actually dealing with this and there you are. I think by networking this way everyone eventually has to benefit, there is so little info out there. My Nephrologist seems to know his stuff, but I guess I'll know more when I go for my first post-diagnosis appt early in December. Will let you know if he has a spin on this I haven't already read. He is a professor of nephrology so I'm hopeful. Being Australian I'm in an even smaller group of "special" patients with our population being relatively small. Keep as well as you all can and will follow closely.

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      westcoastdeedee7 5 years ago

      Well, I have my appointment with the doctor at OHSU on Dec 12. I'll let you guys know how it goes. In the mean time I have to get labs here every week. The protein in my urine went from 300mg to 1 gm in less than a month. I think things are starting to progress.

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      westcoastdeedee7 5 years ago

      I'm on an antidepressant now. I've had days when I can't stop crying. I'm glad to hear it's not JUST in my head that my back hurts. The doctor keeps saying it's not my kidneys, but I think he's wrong. He upped my diovan again and boom- my back starting hurting big time. I didn't take any meds today to see if it would help. Right now I feel okay. I'm suppose to keep getting labs once a week for the next 3 weeks on the increased dose of diovan. I'll try taking the medication tomorrow and see what happens. My doctor said he was okay with my going for a second opinion, but I think he is really angry at me. Either for my wanting to see another doctor or being right about my kidneys going south last time I saw him. Anyway, all my records were sent to the new doctor in Portland. I'll call tomorrow to see about getting an appt with him. My doctor in town doesn't want to see me again until after I see the other doctor. He made it very plain that he didn't want me as his patient if the other doctor gave me treatment options. What an idiot!!!! I'm the one with the fatal disease and he's angry. Sorry for venting. I just needed to get that off my chest.

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      Ninnyx4 6 years ago

      aw my nephrologist yesterday. I've been fighting depression, posted the other day as glenngay instead of this sign on. I've got a back ache but no other signs of a UTI that my labs showed positive. Nothing cultured so therefore both the PCP and the nephrologist decided not to put me on antiobiotics. My creatine level has come down from 1.9 too 1.5 but my kidney function has dropped to between 30 and 40%. The doctor is not worried yet about the drop but his knowledge of GFN is practically nil. He feels confident that we just need to sit and wait until things start to change dramatically and he said no one knew when that could be. I just need to keep going for lab work every 2 months and when there's a signicant change he'll let me know. I DO NOT like being in control but I don't want to be sick either.

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      westcoastdeedee7 6 years ago

      I went to my nephrologist a few weeks ago. I couldn't wait for my appt. Both of my flanks were killing me. I was severely tired. I had no appetite (food tasted terrible to me). I couldn't concentrate at work. My doctor said he didn't think it was my kidneys. That really upset me. I asked him if he ever had a patient with FGN before and he said no. So I asked him if he was treating me like his other patients with glomerulinephropathy (which I also have) and he didn't know how FGN progressed. He said YES. Well that put a fire under him. He ordered labs eventhough I had just had some 1-1/2 weeks prior. He thought it was unnecessary. He was going to order an ultrasound to see if I had stones because I went one day at work without urinating at all. Guess what- I was severely dehydrated, my proteinuria went up, my GFR went down and my potassium level was too high. He sent me for a non-contrast CT of my kidneys instead of the ultrasound. Fortunately, I had no stones. He did cut back on my blood pressure medicates and low and behold- my back stopped hurting and I starting urinating normally again. I decided to check into seeing another nephrologist for a second opinion. I was thinking about seeing one of the doctors mentioned in this blog, but my insurance only covers the states of Oregon and Washington. I found two nephrologists at Oregon Health and Science Univ that have a lot of experience with FGN. I'm going to have my records sent to them. I won't be able to get an appt until December. Oh well. What can you do. Mean time I am getting new labs tomorrow and seeing my local nephrologist next week. I'll keep you guys informed.

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      glenngay 6 years ago

      I really apprecaite all the comments about FGN. I have a great PCP who also wanted to get to the bottom of why I had blood in my urine. The nephrologist he sent me to didn't want to take any unnecessary chances so he sent me to St. Louis to get a 2nd opinion. My kidney stages haven't moved up or down and seems steady but I am battling such a tired feeling, depression and constant UTI's. After reading all your comments I realize I'm not alone. I don't want to go into another stage but I hate this just sitting and waiting. I see the Nephrologist next week and my PCP tested me last week and found the UTI. I don't have any symptons so I opted to wait on antiobiotics until I see the nephrolgist. You just never know what to expect!

    • maconham profile image

      maconham 6 years ago

      I appreciate you forum and your comments. I am fortunate on several respects, one that I had never thought about until reading your latest. I live about 4 miles from my primary care doctor’s office and 5 miles my Nephrologists. Both are very sharp, married to each other, share my case after hours and I have a 24/7 cell phone number and email to contact for them, if needed. FGN still stinks, but I have fantastic medical support and for that I thank God.

    • anitariley65 profile image
      Author

      anitariley65 6 years ago from Little Town Ohio

      Tiredness, then sometimes restlessness. The "heat" feeling, the muscle cramps and especially migraines. I suffer this all and my GFR is still good. Now I worry that it will all get worse when my GFR isn't so good. My local physicians and the ER docs don't know much about FGN, so I get treated like I'm maybe a junkie or something LOL. But I travel over an hour to see my nephrologist at O.S.U. Dr. Brad Rovin. And some days I feel like maybe I should just move up closer to where he is so that I am understood. I was diagnosed a little over 3 years ago but so far have progressed slowly. I just think I was diagnosed earlier than most are. Unless by chance you have a PCP who does specific tests regularly, the only indication of such a problem as this is hematura, that is before bad bloodwork. I was lucky that my PCP was persistent in finding out why I had blood in my urine when there were no infections present. In most everyone else's case, it was the bloodwork that indicated a problem.

      I don't think anyone can condemn another persons choice to choose dialysis or not. It can be a horrible process for some. And if you choose not to go through that, then kudo's to you.

      I am learning so much from all of you. I started this page because I didn't understand what was happening to me and with the small amount of information I could find, I figured there had to be others out there as confused as me. But talking to one another like this is what will help others when they question it all too. I'm not sure what trials there are, but I do know that the last time I saw Dr. Rovin, he was perplexed, LOL. He had actually looked forward to the progression in my illness so that he could try a new medication that was out. If I remember, I will ask him about it next time I'm there.

      I am only on Metoprolol for my BP. Nothing else whatsoever. But for the last 2 months I have been having these "spells". When I described what happened during each, my PCP ran a few tests and came up simply with "mini strokes". I had a brain MRI and ultrasound of my carotid arteries this past week and have yet to hear back from him.My cholesterol and tri's have been good so far as I know or I'm sure I would have heard about it.

      I'm not taking anything for the cramps, but since I started back on Neurotin they have lightened up. I take that for fibromyalgia. I cannot take Lyrica or any other meds for it because I gained too much weight and fluids. Also, some of the meds for it causes bleeding and we all know with FGN that we need to avoid that. I have recurring ulcers also. But I had a total colectomy done at the age of 17 and that is to be expected so I don't believe it has anything to do with the FGN. I go through long bouts of depression because I am so tired all the time, and weak. Again, I'm worried about how much worse that will get when my FGN progresses. But having you all share it all here and on our face book page really helps me. And I am so glad that both help you all also. Stay in touch and never give up hope.

      Anita

    • maconham profile image

      maconham 6 years ago

      Tonight I moved my daily dosage of 200 mg Cyclosporine back four hours from 10 PM to 6 PM and now experiencing a burning sensation in my hands, face, legs and feet from warm water from the shower. My face feels as if I have a fever, but my temp is normal. I remember when I first began Cyclosporine last December feeling very similar. I had became so restless at night I hope by moving it back 6 hours before I go to bed to end that, if Cyclosporine is the culprit, restlessness is listed as a major side effect. My last issue with Cyclosporine was an interaction with my cholesterol meds back in March that sent my GFR down to 17%, caused severe leg cramps when Rhabdomyolysis developed, real nasty.

      Do any of you take Cyclosporine and have you had any of my issues?

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      westcoastdeedee7@msn.com 6 years ago

      Maconham, So how long after first being diagnosed with FGN did you get to the point that the doctors were discussing transplantation?

    • maconham profile image

      maconham 6 years ago

      I feel fortunate that I may not have to go on dialysis. My Nephrologists here in Macon GA, Dr Ludwig Cavaliere, is really on the ball. He is the owner of a local dialysis centers and believes in doing everything possible to keep you off dialysis until absolutely needed. I have heard that some Nephrologists will place you on dialysis when you hit 25%. His wife, Dr Maria Cavaliere, is and was my primary doctor before I had FGN and knew of Dr Ludwig. She probably saved my life when my BP was staying in 220+/110+ range, which is why I fired my previous doctor and moved to her. She takes FULL control over her patients, has emailed me at night when things were out of control just to see how I was doing. I can contact her anytime at the office or after hours by cell or e-mail. Taking the immune suppressant drug Cyclosporine since last Dec, she wants to know immediately if I have a fever, cold or anything. Once early on she had her head nurse walk me to the ER when I was having difficulties, a migraine that wouldn’t end and a BP in her office of 262/116. Her office is in a wing of the Coliseum Hospital here in Macon a couple miles away from her husband’s office and dialysis center. That day was another story in its self, I think had every scan, x-ray and blood test the hospital knew about before they shot Dilaudid straight in my IV six hours later. The pain ended before the syringe was all the way down, about 20 seconds to end the day from hell, I happily walked out of there and my wife brought me home. The two of them work together closely on all my meds and she keeps control of what I take and of my lab work, he will tell her what he needs, that way I don’t have to go to both offices to get my labs. He works closely with the Medical College of GA 140 miles away in Augusta GA. Every few months on a Friday he turns his office over to Dr Laura Mulloy, she is a primary transplant Nephrologists at Medical College of GA in Augusta. She brings a team in to perform follow-ups on their transplant patients here in the Macon area so they don’t have to make the long drive to Augusta. Back in June I received a unexpected call one Friday to come to his office immediately, I had no idea why until after I met Dr Mulloy there that afternoon. She told me that Dr Cavaliere had been discussing my case with her before she came over that week and she wanted to see me. She said in my condition with FGN that she would prefer to get me into the transplant program prior to going on dialysis, the end results would be much better. They had another team that came over a month later to perform the transplant orientation for about a dozen of us, I was the only FGN there, and set up our appointments for full day transplant evaluations in Augusta, mine is three weeks from now. Sorry I got so long winded, but that is my story.

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      westcoastdeedee7@msn.com 6 years ago

      I have a question for Maconham and Judi. How long after you were diagnosed with FGN did you get to this point (dialysis and transplant)? I don't think my nephrologist ever had a patient with FGN and he doesn't know how fast it will progress. The research says 5-10 years. The last 6 months my labs have been going up and down. When they are up they are normal. When they are down they are lower then the time before. I have a feeling that this is the beginning of the end for my kidneys. I didn't know if I should share this with you guys, but I figure we're all in the same boat so, I might as well. I don't plan on going on dialysis or having a transplant. I'm a nurse and neither option is something I want to pursue. I'm single and have no children, so it's just me to worry about. I just wish I had some idea of how much time I have. I would like to stop working and do some things while I have the umph. I hope I haven't made anyone depressed. I am very confident in my decision. I wish Maconham and Judi good luck with their medical procedures. My prayers are with you both and everyone else on this site.

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      westcoastdeedee7@msn.com 6 years ago

      I got my lab results back- ugh. My glucose and cholesterol are through the roof. My Creatine/Albumin ratio, BUN and Creatinine have gone up again. My GFR went down again. I think it's from the bystolic. I'll have to wait until my appt with the nephrologist next month to see what's going on. Yuk!!!!

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      judi 6 years ago

      sorry I havent written in awhile. Been very busy creatine level went to 6.5 and I am now on dialysis Next week i am meeting with social worker and transplant coordinator. Dialysis has not been easy they had a hard time getting needles into my fistula .Blood pressure dropped almost passed out and very bad leg cramps.I am still trying to take care of my mom and dad 86 and 88 but I dont think i will be able to be their caretaker much longer.

    • maconham profile image

      maconham 6 years ago

      Great news, just received results of heart stress test on Tuesday from my Cardiologist office, “0” blockages!

      Next stop transplant evaluation day in Augusta, in Oct.

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      westcoastdeedee7 6 years ago

      I went to the cardiologist today. Luckily my heart is fine eventhough my pulse is still in the 90s. I go back to the nephrologist in October. I hope my kidney functions haven't gone down farther. I'm having my labs done next week. Does anyone know of a clinical trial for FGN? I asked my nephrologist, but he hasn't given me any information.

    • maconham profile image

      maconham 6 years ago

      It appears that the common thread between all of us, besides FGN, is the constant tiredness. I was fortunate enough to have enough years to retire back in January when I turned 55. A mid afternoon nap has became necessity, even just 20 minutes and I’m am back recharged enough to carry on. Another issues is the chills, even during our hottest summer ever here in middle Georgia, I have chills every day. I thought I would freeze to death before last winter ended.

      I am still on 200 mg each day of Cyclosporine and my GFR has remained steady in the mid 20’s for the past six months now. My Creatinine and BUN have remained double the highest max parameter. Another problem I have is with my Cholesterol at 374 and my Triglycerides at 1340, not good. Almost all meds to treat either has kicked me into Rhabdomyolysis with some real nasty muscle cramps.

      I have been on Cholestyramine for two weeks now, so far so good with Rhabdomyolysis, constipation is the biggest side effect with this med.

      Is anyone else in the group having this kind of blood problems?

      I meet with the Transplant team from Augusta Ga tomorrow evening to setup my test and get a position on the list. I have to deal with my biggest addiction, besides food shortly, smoking, wish me luck.

      Then I have a chemical stress test and heart echo scheduled in two weeks with my new Cardiologist. With my numbers, those test scare me almost as bad as FGN! It will be a miracle if I have no blockages.

      Anita, to answer your weight question, I have gained about 20 lbs since this all began last Oct, I have never met a food I didn’t like.

      As I mentioned above and before, my main treatment drug has been Cyclosporine all along, with its nasty side effects and all. It appears that Rituximab is the more common drug used by the group for treatment, I wonder which is better?

      I have always believed in God and Jesus Christ, but FGN has pulled me closer. I pray that he will grant each one of us the power to overcome this disease.

    • anitariley65 profile image
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      anitariley65 6 years ago from Little Town Ohio

      So glad to see all the newbies. Not because you're sick, but because you found us! Now that I'm back up and running again, I hope to be able to keep up with everyone. Will see Dr. Rovin soon I hope and will see where all my levels are after over a yr without a check up. Have had 3 different attacks that were like passing kidney stones. Very, very tired all the time. My pulse also races and my blood pressure has been less controlled with my meds, even after having lost about 46 lbs. So I will be glad to see my nephrologist soon. Take care everyone and if you're not on our facebook, make sure to join us soon.

      Anita

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      Jeri 6 years ago

      Westcoastdeedee & jfarm1,

      Welcome to our world!! I did have shingles a few years back, but I had blood before that, so I don't think it had anything to do w/FGN. I just got done with a 4 week course of Rituximab about 3 weeks ago and my protein level is trending downward. All of my other labs, for the most part have been in the "normal" range, it was just my protein that was going up. My nephrologist at home sends me to the Mayo Clinic about once a year, and I had heard about Rituximab on this site from Daphne, whose husband has FGN, so talked with my doctor at Mayo and decided to try it. Hopefully, it will put me in remission, or completely cure it! Wouldn't that be wonderful??? Hang in there and know if you need a word of encouragement, we're all here for you!! We do have a facebook group, and there are some awesome people on there as well.

    • profile image

      jfarrm1 6 years ago

      I just found this site. I am responding to TC (6 months ago).

      I also have the same doctors at Columbia and was able to be treated with Rituximab (Rituxin). The way it works is that the B-cells attack the kidneys, causing FGN, and the Rituximab kills the B-cells.

      I have been in "remission" since August 2009, meaning that instead of the creatinine continuing to rise rapidly, it has remained steady between 2.7 and 3.1. However, the doctors have stopped the Rituximab and we are taking a "wait and see" approach as to what happens next.

      I would like to think of Rituximab as a miracle cure, but realistically what I hope for is for a little more time before the creatinine edges up again. In the meantime, Rituximab has given me a great deal of breathing room to get my ducks in order for a future transplant. This way, when the time comes, I will avoid delay and dialysis.

      P.S. I am on Medicare and am very thankful that the costs of this treatment are covered.

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      westcoastdeedee7 6 years ago

      Hi All,

      I was diagnosis with blood in my urine 11 yrs ago, protein in my urine 9 yrs ago and, FGN last yr. Presently I have stage III renal disease. The last 6 months my kidney figures have been going up and down. I get swelling in my feet when I don't drink enough water. I get cramps in my feet and legs that are relieved with magnesium. I'm on a low salt, low phosphorus diet. I very really drink alcohol. I'm now diabetic. My cholesterol is high, but I can't tolerate statins. If I use even one advil it effects my kidneys so badly if become horrifically tired (I fell asleep at my desk at work). I can always tell when my kidney functions are low- I get terribly tired. My blood pressure and pulse are elevated. The doctor had to change my meds because they made my kidneys take a dump. Now I'm on diovan, furosemide and bystolic. My blood pressure and pulse are finally under control, but my kidney functions went down. I guess we'll have to keep a watch on it. I have to see a cardiologist for my high pulse. The nephrologist wants to make sure my heart hasn't enlarged (eventhough I had a normal echocardiogram less than a yr ago). I also have glomerunephropathy. I have to check my urine annually to make sure there is no cancer. I've never been exposed to pesticides. I did have shingles. I saw that one person on here mentioned that. Did anyone else have shingles?

    • profile image

      Jeri  6 years ago

      Hey Randy - there is not much info on FGN unfortunately. I too went for years w/blood in my urine. It wasn't until 3 years ago I had a UA done w/tons of protein in it that my doctor referred me to my nephologist and my getting diagnosed. My blood pressure had, for all my life, been low, and then it started climbing. Unfortunately, that is a "side effect". Hang in there!

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      RANDY T 6 years ago

      I forgot to mention i have had trouble controlling my blood pressure for the last 11 months and my creatine level is 2.8. im now waiting to hear from my doctor.

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      RANDY T 6 years ago

      My case sounds very much like anita's.Two years ago my urologist told me that some people just have blood in there urine and NOT TO WORRY ABOUT IT. this was after a cystoscopy,now two years later my urine is full of protein and have been diagnosed with FGN.I live near Nashville TN and i am having a hard time finding any info on FGN. IM 57 years old.

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      Mary 6 years ago

      This all sounds so familiar to me. I was diagnosed nearly six years ago. My protein urea was steadily climbing until I had gastric bypass surgery in 2009. Now my protein levels are around 600mg rather than the 7000 they were running and my creatine levels are around 0.6. My FGN is idiopathic but today was the first time I have has a positive ANA titer. I am concerned because all of the research I read see says that about 10 years total before end stage renal disease. I have not declined since 2009 but it is scary.

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      Ninnyx4 6 years ago

      Well, one thing leads to another and not one doctor can explained why. My Creatine level has dropped instead of rising and that's great but now I have now been diasgnosed with Hepatitus B! Now that's scary! But we are watching both very carefully. But like the kidneys with the liver it's a wait and see.

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      Jeff 6 years ago

      I've not posted in some time, but I've been actively treating Hep C, to retard the progression of FGN. Have taken peg-IFN (and other antivirals)since Nov. '10. My Neph. says my Creatinine and BUN have stabilized after treating the underlying cause (in my case Hep C)This treatment regime hasn't been fun, but at least I'm keeping my kidney #'s in check for the time being.

      Note to "Maconham": I'm glad to know the name of an expert Neph. in Macon. Right now, I'm traveling from just outside Valdosta, Ga. to Piedmont Hospital in Atlanta to a hepatologist, monthly to monitor the toxicities of Hep C treatments. But at least my Kidney #'s are not climbing.

      And thanks to Anita and this site: "The devil you do know is LESS scary than the devil you don't know." and I'm less afraid now than this time last year....

      Jeff

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      Helen 6 years ago

      Is anyone on high cholesterol meds and if so what kind.

      Thanks

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      Ninnyx4 6 years ago

      Hi everyone. I stumbled across anitariley65's article and contacted her by email. It's great to hear from others that have this disease. I was diagnosed Christmas 2010. I've battled the symptoms for years and the doctors just treated the symptom. After changing PCP's he decided to get to the bottom of the cause of the high blood pressure, gout, anemia, edema, etc. So we started eliminating things. I went to a urologist who ran me thru all the regular tests and a cystoscope. Nothing in the urinary tract. From there to a nephrologist who ran his tests, blood work, ultrasounds, etc then finally a kidney biopsy. That was the deciding factor and the lab in Little Rock even sent the speciman to Mayo to be sure of the diagnosis. It seems that there's not a lot we can do but sit and wait until the labs start showing your kidneys aren't working properly. From there he wanted me to go to De. Appel in New York but it was during January and his schedule was really booked and the weather wasn't co-operating. So we were able to get to St. Louis to the Washington Medical Center and saw Dr Donald Coyne. He gave me the same info my doctor here did. I'm having lab work done once a month, we are working on getting blood pressure down but I'm having trouble keeping potassium level on a even plane. I've always had low potassium but now it's running too high and I've been hospitalized for treatment to get it down quickly. So now we are just sitting and waiting and going to the doctor monthly.

      Thanks for all the postings. It sure helps to know there are others with as many questions as I have.

      I live in NW Arkansas, only 60 miles from Joplin, MO so I am very thankful that we have survived the bad weather and my problems don't seem as big as what others are facing.

      We always have something to thank the good Lord for and I do it daily.

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      Daphne Surdin 6 years ago

      Where to start, with the last 8 months and my husbands FGN. After initially being diagnosed with FGN, the nephrologist suggested a bone marrow biopsy to look for multiple myeloma as a underlying cause. That biopsy came back negative. He has constantly been battling his hemoglobin level ever since diagnosis. He has been receiving Procrit shots every two weeks which up until yesterday was keeping his hemoglobin between a 9 and 10. The tried Rituxan therapy again for four weeks which actually lowered the creantine level but not by much, it kept the kidneys from gettting any worse for a little while. Two and a half weeks ago he had a fever of 102 for a day, and ever since then he has lost all of his energy and has been suffering major fatigue. Yesterday he went to his hematologist for a routine hemoglobin check. His hemoglobin fell to a 6.5 from a 10 the month prior. The doctor started him on 40mg of prednisone yesterday, he wanted to hospitalize him but he wouldnt go so against the hematologist better judgement, he sent him home. Last night at 1am he woke me to say he was having very severe lower back pain, it was lower then where the kidneys are. I took him to the emergency room at 4am. His potassium level came back very high, but after the procrit shot yesterday and the 40mg of prednisone, the hemoglobin was up to a 7.7 this morning. The bloodwork also showed his creatnine level to be at a 2.8 which has gone up from two months ago when it was a 1.9. Of course they have admitted him. The hematologist has him on high doses of prednisone, not sure how much as it is given to him in serum form now that he is in the hospital. The hematologist stated today that he is not sure if the hemoglobin dropped because his hemolytic anemia could be acting up again or if it is the kidneys. The nephrologist is not sure what is causing the lower back pain which went away during the day today but has come back tonight. I am sure more tests will follow tomorrow. If it is determined tomorrow that the fall in hemoglobin is due to his anemia, they will give him a blood transfusion, from what the hematologist said. I will keep all posted, if I have time to come back. My husband is only 45 years old and we have 3 girls, 17, 13 & 8, and we own a lawn service which right now has closed down. I am very worried as I do not know what the future is going to hold. All I can say to everyone is One Day At A Time! Take care everyone! I hope and pray for you all!

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      anitariley65 6 years ago from Little Town Ohio

      Goodness. I love you all so much for being here for one another. I'm so glad I decided to write. If anything, it brought you all together for each other.

      Never feel like you're saying too much Bill or anyone else. It's this information back and forth between one another that gives us all hope and support.

      If any of you received any bad emails from my old email account, I am so sorry. My site here was hacked and I had a real mess.

      I'm just glad it didn't shut down on anyone.

      You don't have to do the FB thing. You can do whatever you wish to do. You can even start maybe writing a blog of your own and share your experiences.

      I worry about each of us so much lately. I am seeing a big increase in people doing great, then having a sudden drop in health. But when it gets to that point at least I am seeing neph's jump in with panic and try anything and everything.

      I am also currently without insurance, so I know what that is like. I am petrified that something will go wrong and I will be screwed too.

      I would contact your local Kidney Foundation soon! Give them the doctor's name and any information you have (test results, diagnosis) and ask if there is any options.

      Out of here for a few. So much to catch up on. Make sure if you do start blogging that you notify us all so we can support you too.

      Have a good day my friends.

      Anita

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      Trish 6 years ago

      I'm on Cellcept and Diovan.

      When I first started I was on cytoxan and predisone...lots of side effects! ....but, kidney's are working! I'll be on Cellcept forever....

      Hope all is well!

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      Larry  6 years ago

      As a follow up to my prior comment, bllod tests were conductd to rule out any type of cancer, (lymphoma or leukemia) both were negative. After a visit to my nephologist with the good news, he recommnded me to the University of Miami Mller School of Medicine to seek a second opinion with Dr. Gabriel Contreras, Associate professor of Neprology and a leader in investigaitons of my disiease. He stated that surely my disease is rare, but he has seen atha in some patients, there maybe a chance to slow, not stop Creatinine levels in my urine with certain drugs and if I was willing to try them for a while and to see him in a few weeks to check on any progress anything else. He prescribed Cellcept as well as Cyclosporine Modified and Furosemide.

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      Ashley 6 years ago

      I have this too. I've known what it was since April 2009 but no symptoms at all until the holidays. Started Procrit this month for anemia and just take vitamin d, valturna and one other bp drug. I was shocked to hear between October 2010 and January 2011 my creative jumped from 1.9 to 3.1 and my protein output from 4g to 8g per day. I had muscle spasms big time a couple of weeks ago but a doctor told me to take a calcium/magnesium/potassium supplement and they went away almost immediately. So at this point my only issues are fatigue and worry.

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      maconham 6 years ago

      Hi, guys, I love your site, not a lot of info out there for us with FGN, kind of like the treatment options. My problems began back last fall, I worked in a sometimes stressful job, had problems keeping my BP, cholesterol and triglycerides under control for over 5 years. I did retire after 33 years on my job when I turned 55 on Jan 1st. I also have a disc at C5 in my neck that was replaced two years prior that never fused 100%, that now it has arthritis in the joint. Then in Oct, while taking 5 BP meds daily, my BP soared and migraine headaches began. I ran in the 250-260 range over 115-120 for weeks before my new doctor could get it back under control. During my labs she noticed my kidney function numbers and recommended I see a Nephrologists. My Nephrologists, Dr Ludwig Cavaliere, is considered to be one of the best here in GA and is a professor at the Mercer University School of Medicine. He has me on 200 mg Cyclosporine daily since Dec 1st and bumped me up to 400 mg per day just yesterday. I began with 32% kidney function in November; it went as low as 20% and has made it back 26%. Like most in this group, I am experiencing a massive vitamin D loss; my doc began me on 50,000 per week for 8 weeks yesterday. I have had times that felt like pins in my face, arms, legs and feet. My stomach stays in a burning knot, my mouth dry as a desert, my tongue on fire and night sweats that come and go. I stay too tired to do most anything, except for naps. I also have aches in my joints and muscles from my neck to the end of my toes at times, at least the muscle cramps have been few in the past month or so. It appears that I am the only one in this group to be taking Cyclosporine. ???

      Again thanks for this group, I haven’t felt like hanging it all out on Facebook, but with you guys, feel free to tell me to shut up if I get too much me, me, me…

      Bill

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      csue99 6 years ago

      Darn that gout! If anyone else has that issue is there anything that you have found successful? I'm on Allopurinol to try to prevent the frequent attacks, and then take Colchicine in massive dosages when it hits. When it is at the onset/severe stage, I can't even get up or down from any sitting position without excruciating pain. My insurance over the years has rented us a wheelchair but I've had to return them all. Hubby bought me a transporting one last week. He'd push me to the bathroom as needed but it still doesn't help the up and down. Oh well, so it goes.

      In other happenings - I managed to spill boiling water on my stomach and left hand 4 weeks ago. Six days later I was in the hospital with a burn infection, for almost a week. I am also a diabetic. So besides the infection my sugar was high and my blood pressure was high. I did do one thing right, IMHO. I called my kidney doctor. I was at a hospital that he doesn't service. I was uncomfortable with random doctors dispensing so many drugs in me and worried about the effect of those drugs. He called in a buddy who works that hospital who paid me a visit. He checked my records and the good news was there was no increase in trouble.

      Before the gout though came the flu (5th out of 6th to catch it in one week). Then a major cold. Sheesh, I'm tired of being sick.

      Hope everyone else is doing okay.

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      Harriet 6 years ago

      My friend Rae who was diagnosed with FGN in December of last year has just been denied the treatment she had been waiting to start because she has no insurance. They had been stringing her along telling her she would start the treatment and they should have known she had no insurance (it wasn't like she was hiding it) and let her know months ago there were no treatment options, because now she feels like the rug is out from under her.

      Does anybody have any ideas about alternative treatments? Money is very limited, travel is probably not an option (no vehicle to drive). She was going to have once-a-month infusions of Rituxin, that's what she can't get. At the moment, her kidneys are functioning great, but the protein level in the urine is higher than it was.

      Best wishes to all of you. I can tell from observing Rae how confusing and sometimes frightening it is to be diagnosed with this.

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      Jeri 6 years ago

      Hang in there Judy - we're all here for you...

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      Judi 6 years ago

      fistula is in .doctor says within 3 months i will be on dialysis/ creatine level is now 5,0 still feel fine just very tired so they are giving me shots of procrit

    • anitariley65 profile image
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      anitariley65 6 years ago from Little Town Ohio

      I think everyone's symptoms vary. I had no initial symptoms other than the hematura, but since have developed some we are trying to figure out (as to whether they pertain to the FGN). I am extremely exhausted, I have flank pain occasionally, and sometime so bad they thought I was maybe passing a kidney stone, but found none. I have constant headaches and limb weakness. My bladder is a mess too, not sure if that's related. I just know I don't feel good all around, and my FGN isn't progressing very fast at all. But from what I am seeing and hearing, it does that, then just gets really bad over a few mo. time, quickly. Some of our friends here and on Facebook have gotten pretty bad lately. One girl had her port put in to prepare for dialysis and has had nothing but trouble since. Been praying for her. Another girl on FB just had some surgery done also, not real clear on what exactly but do know it has something to do with her kidneys.

      So glad so many are still doing well, and we need to keep the others in our thoughts and prayers please.

      Anita

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      Trish 6 years ago

      Wow!

      I haven't visited for a while. A lot of people posting. This stupid FGN! :)

      I'm going to read everything I've missed!

      I'm doing great. Still on my meds and FGN is under control! YAY>

      love to all!

      Trish

      Trishyo@ymail.com

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      TC 6 years ago

      Whether or not the medication can reverse the damage is a question the doctor would like to answer. At this point we don't know.

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      Jeri 6 years ago

      Question for all of you . . . Can you guys & gals tell me what kind of symptoms you have? Not the swelling, but are there any other symptoms you have? Thanks in advance!

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      anitariley65 6 years ago from Little Town Ohio

      Helen I am right there with ya! Sounds like you and TC are doing great, well as well as can be expected.

      TC- Is this medication holding things at bay or reversing the damage? I mean, if it can STOP the damage process that is great! Some are past that point and cannot get back to not needing a kidney transplant, but there some who still have decent kidney function that this would give great hope to.

      Both of you keep in touch and keep us up to date on your progress. Thanks for joining us also!

      Anita

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      TC 6 years ago

      I was given the devastating diagnose 3 years ago. I found a doctor at Columbia Hospital in NY that is an expert in the field. He prescribed Rotuxin which my insurance company would not approve. I then went on Cellcept which has made a huge difference. I am in the process of reducing the dosage with the hope of going off of the medication. The blood work and urine test results are very positive. The doctor's name is Gerald Appell. He is an excellent resource for a second opion.

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      Helen G. 6 years ago

      I have been following all of your comments for some time. I am also a fellow sufferer of this confusing, difficult disease. I am fortunate to have a large family and one of my darling daughters has volunteered to give me a kidney. I've gone through all of the transplant investigation and am now on the list. I have been so lucky up to this point that I haven't had a lot of complaints other than keeping my blood pressure normal. I've probably had this for quite a while and am on Procrit now. It's very cold here in MN--I want Spring.

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      anitariley65 6 years ago from Little Town Ohio

      Jeri is right, all we can do is support one another in this journey. I'm thinking there are so many others out there who we don't even know about that are even further than this. One of our girls was prepped through the stomach a couple weeks ago, and is on regular Procrit shots also for the anemia she developed. She had a little trouble the first week but is in good shape right now.

      JERI this is very good news. The fewer problems the better, not that any of this is good anyhow, but you keep your chin up too!

      Judy I think Jeri and your doctor are right. The less stress, the better your body will handle the dialysis when the time comes.

      We all knew, but I'm sure hoped not, that these days would come. As we are faced with upcoming events, let us gather strength and knowledge from one another. That is what I created this page for, and we are blessed in one another. I know I am thankful to have each and every one of you in my life. I just wish I had more to tell you. But talking one here amongst ourselves is the best way to learn. Sharing any new news gives us hope.

      Take care, stay safe and warm. Ohio is at a stand still in most areas. Maybe I'll find a muse to get my investigative skill juices flowing again since I'm snowed in.

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      Jeri 6 years ago

      Judy - I took care of my mom too - while it was such a privilege, it was very stressful. It may be beneficial for you to be out of the house for a while. Just the pits that it's for dialysis...Hang in there -

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      Judy 6 years ago

      they say i can't have home dialysis because I am a caretaker for both of my parents.There is no one else in the house in case of an emergency.doctor thinks i would be better off getting out of the house..he thinks i need a break from them..

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      Jeri 6 years ago

      Well, MRI came back clean, no amyloidosis or temporal artery inflammation. Guess we'll just have to wait to see if there's another episode.

      Judy- I don't have one, but one of my friends does. He also has home dialysis, which I think is much better than going to a clinic. I think he does it every night, for a shorter period, rather than the 4 hour stretches 3-4 times a week. You hang in there - we're all on this journey together, some of us are just further than others.

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      judy 6 years ago

      well I saw renal dr today he said for me to call surgeon to have a fistula put in my arm for dialysis,,not having to start yet but he wants me to be ready.anybody else have one ?

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      anitariley65 6 years ago from Little Town Ohio

      Larry- I have not yet heard a single thing stating that Leukemia or Lymphoma are involved in this disease. They evidently don't know enough about it. Mine is yet undetermined to have a cause, but most causes form from Hepatitis C, Lupus, HIV and such. Well, that is what most of us have been told so far. But it is still under heavy study so who knows. I would be very interested to know if either of the diseases you mentioned ARE your causes. That would give many of us a broader choice of causes. I know that sounds confusing. Prayers up for you and your wife. Put it in His hands.

      Jeri- I have heard of this happening, but so far I'm thinking you are the first to be tested for this. As with Larry, I would really appreciate if you shared with us what they find out. And prayers out for you too.

      Everyone be safe, warm, and healthy. Love you all.~ Anita

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      Jeri  6 years ago

      Well - interesting developments. I have an MRI scheduled for tomorrow, among other things looking for amyloidosis, which evidently my nephrologist shared with my primary doc that I would be at greater risk of developing. It is extremely rare as is FGN. I still haven't developed any kind of swelling, but my last labs showed my protein at a higher level than it's been since being diagnosed 2 1/2 years ago. Still positive, but concerned about what is coming down the road. Everybody hang in there.

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      Larry 6 years ago

      I have been tentatively diagnosed (?) with this rare disease after a biopsy was done, my nephrologist have submitted to an oncologist to investigate or eliminate what is causing this, (Leukemia or Lymphoma, as he stated). My wife is, needless to say devastated, I feel a little worried but If it is God's way, so be it. Further test will need to be performed to get a final result.

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      anitariley65 6 years ago from Little Town Ohio

      So sorry Judi. I know what you are going through with the muscle spasms and being so tired. I hope things get better for you soon. Keep us updated.

      Happy New Year everyone!

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      Judi 6 years ago

      creatine level at 4.5 now..had my last cytoxin infusion the other day..had my procrit shot too.will see doctor on the 14th of jan..don't know what else they can do now.getting muscle spasms all the time and i am so tired.

    • anitariley65 profile image
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      anitariley65 6 years ago from Little Town Ohio

      Welcome Judi. You are DEFINITELY a survivor! There are a couple of us here now on Procrit. Not myself, but you will find support from those in the same boat. This gets me to wondering if all of the steroid injections over the years for my arthritis and such is what has kept my disease at bay??? The more I read from all of you about different treatments, and past treatments and illness' really makes me wonder. Another funny thing, which tells me I need to have some workups done, the other day I had to make one of my monthly trips to the ER for a migraine and dehydration, and when the nurse drew my blood, she asked me if I was on blood thinners??? My normally uncooperative veins spew for her. Every time I go in there I have asked them to please check my creatine levels, but that never happens. I wonder each time I get a horrible migraine if my disease has a hand in it. It perplexes me that with so much unknown about FGN, that they wouldn't take into consideration each persons constant symptoms, especially if there are several people with the same ones.

      But we are not the experts here I guess. Keep us up to date if you don't mind. This is how we are all learning.

      I WOULD LIKE TO WISH EACH AND EVERY ONE OF YOU THE MERRIEST OF CHRISTMAS'. I PRAY FOR SAFE TRAVELS AND GOOD HEALTH FOR EACH OF US AS WE SPEND THIS TIME WITH OUR LOVED ONES. I AM ALSO PRAYING THAT THE NEW YEAR BRINGS EACH OF US GOOD NEWS! LOVE YOU ALL~ Anita

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      Judi 6 years ago

      I have been diagnosed with fgn..I have had 3 treatments of cytoxin and 120 mg of predisone every other day..I am a 4 time cancer survivor and just can't believe this..My creatine level is at 3.8 and i am anemic..Will start procrit next week..so good to see other people in the same boat as me..

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      anitariley65 6 years ago from Little Town Ohio

      Wow Rae, thank you so much. This disease will drive you crazy if you let it. DON'T LET IT. There just is not enough known about it is all. It will take people like us demanding further research, and offering ourselves up for that, to find answers.

      We have one of our friends going in for surgery this week. She will be having a catheter inserted, and she will be beginning dialysis. I will try to keep you all updated on her progress. She needs our support and prayers. She's having this done just before Christmas and hasn't much support at all at home. She is sole caregiver for 2 family members. If I lived closer I would help her, but all I can do right now is pray for strength for her.

      Hope everyone has a blessed and wonderful Christmas.

      With Love- Anita

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      Rae Cobbs 6 years ago

      Hello, everyone! I appreciate all of you for your strength and support of each other. I stayed up until 2:30 AM last night, reading voraciously. Since I found out five days ago, I have been unsure of how to react to the news that I have FGN. I began to suspect something last Spring, when my ankles suddenly began to swell. Because I attend clinics, it has taken until now to get the results of the biopsy I was told I needed then. I guess I was hoping for some magic pill that could fix the years of depression, fibromyalgia, arthritis, and low energy that I feel somewhat famous for around here. It is as though nobody trusts me to be responsible and reliable.

      Your writings have shown me that many of you have faced this longer, researched greatly, and written for the rest of us. I am so glad, Anita, that you originally dug in and put your situation on the line. Last night, as I read about your experience, my eyes were opened wide. I did not know that this disease could be so consuming. You all have made me realize that I am not alone and that I have much to be watchful, and grateful for. Thanks!

      Rae Cobbs

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      anitariley65 6 years ago from Little Town Ohio

      Wow everyone! We have been busy bee's.

      Welcome to all the newbies and thank you so much for sharing your stories.

      I have been going through some tough issues in my life lately and have neglected you all. I am very sorry for this. I have met an MD on youtube who has an online pathology class, very accredited, and am beginning the questioning. lol

      If you look at some of his videos and listen to him explain things, you get a much better understanding of all this medical jargon, staining and such. Found him while trying to find some pictures of the spots on my legs and feet, trying to figure it out. The doctors don't seem too worried about it, but I HATE it, little red dots all over.

      I am alone here most days now, so I am hoping to get back in the swing of things with research and writing.

      When I possibly can, I will post a link to his videos on here. It won't show up as something new, you'll just have to look for it. Hubpages needs us to post links a certain way.

      I know that I am inspired by each of you.

      Talk to you soon.

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      Helen 6 years ago

      I worry about the day the Neph says it's time to start dialysis as well. It scares the hell outta me. My Doctor told me out right that my FGN was progressive and I had two to three years. I have started to notice swelling that comes and goes this is new to me as I had several other symptoms. Most information I read says median age is 50's however Im 47 kruthe is 38 and was diagnosed around 29 and is now going on dialysis. I think pathologist can only give results of the biopsy to what they know I have questioned several Docs about interpetation of my results could be wrong they say no.It has something to do with the size and shape of the fibrils. There appears to be some differnce in the congo red staining they do with the tissue but I'm not sure what that means. Could be the diffrence of progressive and non progressive I believe there are both kinds as some people have never progressed to dialysis.

      Stay Strong!!

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      Still here 6 years ago from Brisbane Queensland

      Hi All

      Sorry Anita, I've been busy and did not have time to post as promised. I am still scratching my head from my last bloodwork. Like yourselves, I have been looking for answers and not finding any, just waiting until the day came when they put me on dialysis. After seven years of knowing that I have this, my last tests came back within normal limits and my BP is under control.This is raising a lot of questions for me. There are two changes I have made in medications. I starting taking Micardis ( Telmisartan) six months ago as my nepth felt it would lower protien levels, which is what has happened. The other change is that I suffer hay fever and for years I have used different steroids to relieve the condition. I stopped using the steroids 12 months ago. I have asked my nepth again if there is any evidence that there is a progressive and non progressive strain of FGN, the answer is the same, they don't know. Like many of yourselves, when I had my biopsy, they said I'd be on dialysis in 2 years. I am now starting to wonder if they stuffed this up and I have something similar, that shows up as FGN, but isn't?? How many of you have had a second biopsy with exactly the same result?? I have considered asking them to do it again, but I think you can all understand my equal reservations.In saying all this, who knows, my next appointment with my neph is in April and I could be back where I started.

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      Robin F 6 years ago

      Hi Kruthe - I was diagnosed just over a month ago, and was initially told 2 years too. I found a website helpful for dialysis info, called ihatedialysis.com. The people there are extremely supportive and most are on dialysis and can answer questions about it. Best of luck to you.

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      kruthe 6 years ago

      Hello All.

      I was diagnosed in 1/1999. was predicted to be on dialysis within 2 years! Had just gotten married and was told i couldnt/shouldnt have a baby due to the stress it would put on my kidneys. Well, i had a baby which is 9 years old and have faired quite well. Today however is a different story...my creatnine is currently 6.0, my blood pressure is hard to control and i was told today by my neph that it is time to begin dialysis. I must admit that i broke down and sobbed uncontrollably for about 20 minutes. I have always been extremely fearful of this point. I am afraid, confused, and oissed off. Any suggestions/advice on what is to come. I am a 38 y/o mom who wants to be around!!!

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      Robin F 7 years ago

      Wow - I am sincerely grateful to find this site, thank you all for being here, I feel so much better after reading your posts, I have absorbed some of your strength. I was diagnosed with FG this week. Here is my story so far:

      It started with high cholesterol back in May, which medication has brought down (lovastatin). An annual physical in July revealed an issue with kidney function (39), high blood pressure and elevated white blood cell count. I was going to a clinic at the time due to lack of health insurance (disability case - extreme stress, anxiety, depression). Still, even with thos things I've never had these issues before (blood pressure, etc). The clinic doctor recommended a follow up in three months. My temporary disability payments started after a year and a half around then, and I was able to get some sort of health insurance back, so I decided not to wait and see someone else. I guess I'm glad I did, sort of. I got a better doctor who referred me to a nephrologist upon confirming the kidney results (still 39). She also found a vitamin D deficiency and I am now taking a vitamin D supplement. The nephrologist did further bloodwork and found high levels of protein (4g)and blood in my urine and high levels of calcium. He recommended a biopsy. Now that it's Oct., the whole thing still took about 3 months, but after reading here I guess I should be grateful.

      The biopsy determined that I had FG, and I was given the news 5 days ago. Since then, I have been trying to absorb and understand what I need to do. Here is what I have learned so far -

      I have continuously heard that blood pressure control is important. Right now we are trying micardis - supposed to help filter the protein as well as bp - bp is still a little high, around 140/95 average. Giving it another week or so.

      My nephrologist explained 3 "experimental" treatments available and told me he thought it would be about 2 years before I needed dialysis. He didn't think very highly of steroids or chemo, but he favored trying rituximab injections. After looking at the side effects of this drug, I am not keen about it and would almost rather just let myself progess as it will. Anyways, with last week's test my kidney function dropped to 33- we are hoping that was a fluke. My potassium level also rose.

      In the meantime, he referred me to a hematologist for a possible bone marrow test. After preliminary bloodwork, she didn't think I needed the bone marrow test, we are waiting for the final bloodwork to come in to be sure and a re-test on my kidney function to see if it is still dropping. I have an appointment to follow up on this on October 19th.

      I have many factors in common with some of the things I've read here, and some differences. In my history, I have been diagnosed with or dealt with: alcoholism, post traumatic stress disorder, anemia, epstein barr, hep c (dormant for many years).

      In the meantime, I have cut out coffee (cafeeine may raise blood pressure), am working on quitting smoking (got the e-cigarette with pretty good results so far, need a regular cigarette occasionally), have been instructed to eat a low salt diet (less than 2000 mg/day) and to stay hydrated (drinking lots of water).

      I am also NOT eating potatoes, tomatoes, bananas or oranges right now so as not to further raise the potassium.

      I was told to avoid protein from animal meat, so red meat is out for now and I read all the labels on anything I buy and avoid high protein, salt, calcium or potassium.

      I am trying not to eat any foods that are processed at all. If you see it on tv or it comes in a box, or is frozen (except fruits and vegetables), I avoid it.

      I use sea salt if I need salt.

      Thanks for the star fruit recommendation, never had it. I am also filtering my water.

      In place of coffee I have substituted teas - am experimenting but I went to Chinatown and spent some time and asked for teas with little or no caffeine that were calming and had good properties for health, and have been drinking chrysanthemum flower tea and gong ting pu-er tea. I seem to feel better when I drink them.

      To keep myself from getting sick of them, I am also drinking organic, loose green teas and am trying others.

      I am drinking cranberry juice besides water, and am eating fruits, vegetables, rices, seafood, chicken and pork for now. Whew- what a week.

      As for recent symptoms, i have what I thought were weird ones that my doctors did not understand until I read the posts on here.

      I have had a low level burning ache mostly on my right side under my rib cage and sometimes towards my back.

      I go from a hot flash (had a hysterectomy in 2005)which is not new, from feeling cold, esp hands and feet, which is new.

      I have had the weirdest tastes in my mouth. This is recent.

      I have had some blurry vision (the scariest thing to me)

      As I am falling asleep, I have had a lightning bolt shooting pain through the center of my body, and more recently, the other night just as I was falling asleep I felt like there was champaigne shooting through me blood, which kept me up all night, but only happened right as I tried to fall back asleep. Then it stopped the next night.

      This is all freaky and I am seeing an acupuncturist, who I know does help with relaxation (I was seeing one before the diagnosis), removing toxins and increasing my energy levels.

      My appetite has been poor for a long time, I always thought it was stress, though I have been overweight. I lost 10 pounds in the last month just as I was trying to make myself eat more regularly, could just be a result of increasing my metabolism. I had just been through a year and a half of extreme stress, anxiety and depresssion and was working through that when this happened.

      I read something about this PCR Lab test in an earlier post, and will mention this to my doctor as I took a prescription antacid to counter a bad (nausea/reflux) reaction to the first cholesterol med I was on (can't remember the name at the moment).

      I have joined the facebook page and will post any new info I come across. My email is robinf8717@gmail.com and I am happy to correspond with anyone re: this disease. I have one grown son, no siblings, one live parent and have been isolated for a while, and I couldn't believe the rare nature of this disease and lack of support when I first heard about it. This is one time I am glad for the internet.

      I am the only patient my nephrologist has ever had with FG and the second one is the ten year practice here in Washington state. Still, I feel more confident about my doctor now than I did at first as he seems to have bothered to find out about available treatments and so on. I am meeting with a second nephrologist next week just to see if I can get any more information, although I am beginning to think at this juncture I've got all there is.

      Thanks again for sharing your words of encouragement and support, I don't feel so alone now....

    • profile image

      Juli 7 years ago

      My dad (51 yrs old) was recently diagnosed with FGN. He has always had high bp for the last 10 or 15 years. His GFR rate is 22 (very low) and his doc states he will need dialysis in a year or so. He was diagnosed in June of 09. He has also had trouble with anemia which is stable at this point and elevation of PTH (parathyroid hormone) due to his decrease in calcium. Parathyroid gland controls your calcium and phosphorus level so when calcium level drops your body triggers PT gland to secrete hormone. Which is all related to Vit D too.

      His labs (not sure about cholesterol right now) are normal except for creatine (very high) 3.4, BUN 34, and his RBC's low. Interesting his wbc is nl except for his basophil count are always high? His PTH (parathyroid gland hormone) is also high secondary to FGN. He takes calitrol for that and PTH was last 298 with nl~ calcium level of 8.7.

      HE was also diagnosed with HEP C which is having that checked out this week. Rumor is.. it is in remission but we will find out when he sees hepat doc. He had a blood transfusion for back sx back in 1982 or 1983 and they think he got it from that.

      He has a long history of analgesic use for chronic back and neck pain from previous accident... not sure if anyone else does... Maybe a factor in progressing his disease. Also read previous posts about flouride and has always been used where I live in our drinking water. Studies have shown it to be cause of renal failure and thyroid damage. Not sure about pestisides...he is not a farmer nor lawn care but I dont know what all he as really been exposed to over the years.

      I am really worried about him and plan on checking to see if my kidney is a match in the near future. Worried what they say is going on with liver because of hep c.

      Apparently there may be some correlation with immunoglobin IgG and C3.... I did not see any test where he was tested specifically for immunoglobins (antibodies)nor did I see anyone else mention it. But the immunoglobin I will research further and get back with ya'll. I believe it is some sort of autoimmune disease in which there are to many antibodies in the system or autoantibodies that attack and deposit in the glomeruli of the kindey causing basically them to become sclerotic or scar... causing deficiency in filtering the blood...

      I am interesting in natural things that could help keep his bp under control and anything anyone else that may have found that may work in any way. I hope everyone is doing ok and you are all in my prayers. I am really worried bout my dad and will get back with ya'll.

      Im really worried about my dad and Im researching this the best that I know.

      Oh and one more interesting thing.. he has not had a cold in a longgggggggg time??? AS a matter of fact I do not remember him in several years ever being sick?? Something to think about.

      If anyone would like to chat my email is jciano1217@yahoo.com I would love to hear about everyone's story..... Im really trying to research this as much as a I can on my spare time. I have some good basic knowledge in the medical field which makes it a little easier for me to understand... Please email me if you get the time!!! And if anyone has found a research hospital or someone that specializes specifically in this disease please also let me know!!

      Thanks so much and good luck to everyone!!!!