My 3 Day Steroid Treatment for MS-Part 1

If you are reading this, it is probably because you are in dire need of information about what it will be like to be put on high-dose steroids for a 3-5 day period of time. It may be your first time receiving an IV pulse and the thought either terrifies you and/or makes you feel relieved at the thought of ending a major attack or flare-up of your MS. Rest assured you've come to the right place for the information you seek, so please keep reading.

Back in the day, when one had to go to the library or send away for information from the National MS Society, I would have killed to be able to do a search and find immediate answers to my questions. Now with the proliferation of the Internet, this knowledge is at your fingertips and immediate answers are provided.

This article is the first in a series of articles chronicling my steroid treatment from my first realizaton I was in a major flare, to my visit and examination with my neurologist, to each consecutive day of my 3-day pulse. The series will end with a detailed description of what the inevitable steroid crash feels like, when it first hits.

So without further delay, I will start with the realization that I was experiencing a major flare-up that could no longer be ignored.

Thanks to the Internet, knowledge about MS related subjects can be found instantly.
Thanks to the Internet, knowledge about MS related subjects can be found instantly.

The Flare-Up

In retrospect, I concede it took too long for me to realize my MS was getting out of hand. Its what can happen to you when you get used to being chronically ill. I thought I just needed to play the waiting game while resting and doing all the common sense things I've learned to do to cope with MS, and eventually I would get back to my "normal" level. Most of the time that philosophy serves me well, but then there's that small percentage of the time when nothing you do serves you well and you must consider bringing in the big guns. I have symptoms that now require the big guns to get my body to quit attacking me.

What are those symptoms and what differentiates major flare-ups from minor flare-ups. I have  written in detail, about what my major symptoms currently are. You can read about them here. Keeping in mind this is only what I experience, and everyone's MS behaves differently, you still may be able to relate to one of my symptoms in evaluating your particular needs.

 Don't forget to determine whether your symptoms are what is called a pseudo flare or the real thing, as well. That article is also available, just click this link

If after analyzing your situation you feel you may be in need of further assistance, then you and I are walking in the same tracks. I was able to take advantage of a cancelled appointment and got in to see my neurologist, June 11, '09. I suppose it was obvious to him that I was in the midst of a flare, because he hardly took any time examining me. I was afraid he would want me to jump on one leg, or do the heel-to-toe "sobriety" test and I was prepared to tell him I knew I wasn't up to even attempting it.

Instead, he was very gentle, told me to remain seated in the chair so that I wouldn't have to use my energy getting on the exam table, and then did only the most necessary tests to determine my level of weakness. He even put my shoes on for me after examining my reflexes. I was shocked and thought what a kind and gentle man my doctor is. There just aren't too many doctors who are true gentlemen today. I think you have to be very humble, a quality most doctors do not possess.

He told me he was very concerned about the progression of my MS and reminded me that when I do flare-up, the same attacks keep occurring and that he was afraid that my legs might suddenly get to the point where they are attacked and they don't recover. This is one of my biggest fears too. You can read about it in more detail, if you'd like in my article about what scares me most.

Reluctantly, I decided to make a major change with my MS therapy.

Back To Copaxone

So it is back to Copaxone, sticking myself every single day with a needle, only one of my biggest fears in the world!

After my 3-day infusion is completed, I will have to meet with a nurse from Copaxone, in my home, and go over how to self-administer the injection and if memory serves, I will give myself the first injection in her presence.

My neurologist assured me that all the problems I had before with Copaxone will return, so I'm not promising how long I will stay on it, but I'll do my best and stick with it as long as I can. For now, I'm more concerned with setting up the Solu-Medrol. I'll deal with my needle phobia afterward.

Home Infusion

Because I've had so many pulses in the last 16 years, I can request the home infusion. That means the Solu-Medrol is delivered to me along with all the paperwork that must be signed. I refrigerate the IVs and await the visit of the nurse. In this case I will be seeing the same nurse who has set up the infusions for me since around 2002. It will be good to see her again, since my last infusion goes back to 2005 or so.

I like to receive the infusions early in the morning, but with the very first one, it can take a little longer to receive depending on the nurses other appointments. I will therefore be receiving my first infusion between 1:00 and 2:00 pm today. NO SLEEP FOR ME TONIGHT, I imagine.

New Shape and Size

I was surprised when I was informed that the steroids where now available in a small ball instead of a long bag. With the ball there is no longer any need to lug a IV pole around with you. Apparently I can easily carry it around with me. I don't quite understand how that will allow the IV to drip, but guess I'll find out in a little while.

Part 1 in a Nutshell

So, in summary, Part 1 consists of identifying the severity of a flare; setting up an appointment with the neurologist to determine whether steroids are needed; getting the proper authorization to the home infusion facility; (faxing a prescription to them) receiving delivery of the infusion supplies and paperwork; taking out the solution at least 30 minutes before the nurse arrives and finally, putting in the line and starting the IV.

Next, Part 2 will describe the setting up process with the nurse and the effects felt once the steroids hit the bloodstream.

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Comments 15 comments

Melissa Gamboa profile image

Melissa Gamboa 4 years ago from California

Hello Jen. I have been diagnosed with Multiple Sclerosis for 16 years and going on 17 years next year, 2012.

Last Saturday, I was released from Eden Medical Hospital. I had a MS flare up due to not having my MS Tysabri infusion for the last 4 months. I was trying to clean my system of tysabri so I can start the new FDA approved MS Oral Medication called Gilenya. Again, waiting the 4 months to start it autimatically had my husband taking me to ER.

Most doctors in the Eden ER facility know me because they like the fact that I never complaine and have a very threshold when it comes comes to pain. in no time, an IV was injected in my arm and I just had to wsit in urgent care until they could get me a room. This last time being admitted into a hospitsl due to a bad MS flare up was my fourth time, I believe. There was ine time I was addmitted due to having asbib (can't spell) building up.in my ehole left ab due to injecting myself with Betaseron 1B. A sergon had to give me a 3 inch indidion to drain it all out. after thar, I learned to do my own packing so it can heal correctly.

All in all, having MS has taught me a lot in li i learned thatfe. I learned to be patient. My son is the best thing that c as me out of me while having MS. He's just turned 7, but he learned to as lways hold doors for me and other people...missy

$;-)


Jen's Solitude profile image

Jen's Solitude 5 years ago from Delaware Author

Hi Sandra, I am so happy my experience has helped you. I am doing quite well, all things considered. :) I hope your experience with solu-medrol goes as smoothly as possible and that you experience relief from your symptoms. Hang in there!


Sandra 5 years ago

Hi I read your story and it has helped me...I think I am a lot like you...lol. I am going for my first ever iv treatment it is 5 days as an outpatient at the hospital...I am a little nervous but know something needs to be done to get this attack under control...reading what you wrote has helped me feel not to terrified...

I hope you are doing better...


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Hi Maria, It is great to meet you! Thanks for taking the time to drop me a thank you. We have the same leg problem. My most recent flares have involved my legs especially my right one, it is a drag, literally and figuratively. LOL

Please feel free to email me with any questions or concerns you have. (See my profile page) I would like to post a URL to a blog for you to read. Amy is a good friend and her blog helps newly diagnosed and veteran MSers alike. Take a look and I'm sure you will be happy you did.

Here's the link: http://mslol.wordpress.com/

Take care, let me know how you make out with the steroids, okay?


MARIA 6 years ago

Hi Jen, just got through reading your story on steriod use for MS treatment I got online looking for info on this and found your story THANK YOU sooo much I needed to see that I am newly diagnosed Nov 09 and my Dr. just informed that he was requesting a 3day treatment well needless to say that it terrifies me I didn't even realize that I had had a flare-up I knew my leg more so my right leg just was dragging more than it usually does and that I felt like crap there is so much that I don't understand,sometimes I don't know what symptom is from what, is that realistic? sometimes I find myself very angry,and don't know how to channel that anger,anyway I am very happy to find sisters like you in the movement that can help sisters like me understand some of this. Once again Thank You and God Bless.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Hi adrienne, I'm happy to provide information about something I have been dealing with for years and years. I'm rewarded when it proves helpful to others. Thanks for your comment!


adrienne2 profile image

adrienne2 6 years ago from Atlanta

Hi Jen, thank you for being brave enough to write about your MS and treatment. You're tops!


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Hi Pollyannalana, I will look for your hub. There is plenty of info available online, I totally agree. Thank you for your well wishes, I sincerely appreciate it. I'll look forward to getting to know you better. :)


Pollyannalana profile image

Pollyannalana 6 years ago from US

I just finished a Hub on MS, Annette Funicello has it and making it and also a sister-in-law, I pray they will hurry with their research and that you will have many years and even a cure is possible before you suffer much more, I found loads of information online..I hope you have the best of care.


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hi glorena, don't worry the fans will come! Your daughter was diagnosed around the same time as me. Is she relapsing/remitting?

Thanks for dropping by, I appreciate it. :)

Jen


glorena profile image

glorena 7 years ago

Hi there, First thank you for being my first and only fan at this point..lol..Second, I know what you have been going through, my daughter was diagnosed with MS fifteen years ago. She is being infused once a month now but Im not sure if it is a steroid or not, I will find out..more later..got to go now but thanks again for reading my attempts at humor


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hi Useful Knowledge,

Thanks so much for your encouraging comment. I most certainly will take your advice and hang in there. (smile) Thank you also for following my hubs.

~Jen


Useful Knowledge 7 years ago

Hello Jen. I am sad that you have to face this condition. However, your strenght shows tremendously through your writing.

I am glad that you are sharing your trials to help other people.

I used to watch Montel Williams every day (I love the Montel Show) and watch him fight his battle with MS.

You hang in there. You will get through all of this. I am following your hubs and I think you are an inspiration to us all:)


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hey dawei888, what a nice guy you are. I'm sure the steroids will help, even if they take a little while to kick in. The legs sometimes take a little longer to heal, but I'm hopeful as the steroid treatment has worked in the past. Lupus is tough. I've had friends with it and it varies in degrees right? I hope your sister will be able to enjoy a healthy summer! Just waiting for my nurse, who should be here any minute now! :D

~Jen


dawei888 profile image

dawei888 7 years ago

Hi Jen - I just read through a few of your hubs about MS including this one. I hope that your flare-up ends soon. My sister has lupus and uses the same words "my lupus is flaring up". I'm sure your hubs are helping and inspiring people with MS and other autoimmune diseases all over the world. keep us up to date and I hope you feel better soon! -dawei888 :-)

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