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Has anyone tried Rituxan?

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    Brenda Durhamposted 3 years ago

    It's an infusion used to treat some serious diseases including RA, given about twice a year, directly into the bloodstream I guess....
    Info says it can cause really serious side effects.
    But so do lots of drugs.
    I'm wondering if anyone here has any experience with it?

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      Writer Chuckposted 3 years ago in reply to this

      Hi Brenda,
      I have been and still am an RA patient and I've tried about everything. I have not heard of Rituxan. I am having great success with Humira taken once a week by self injection.

      All of these drugs have serious side effects, but the numbers are on your side. if you haven't tried Humira ask your doctor about it. for me its been a wonder drug.

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        Brenda Durhamposted 3 years ago in reply to this

        Hi Chuck!  Thanks.
        Doc had suggested Humira or Enbrel over 6 months ago.   I've been on Enbrel about that long;  it's by self injection and similar I guess to Humira.    But it doesn't seem to work for me.    I dunno if Humira would be any different for me.   I'm so glad it's working for you though my friend!

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          Writer Chuckposted 3 years ago in reply to this

          I tried Enbrel to and it just didn't work.  Humira is the only thing that has worked for me, and believe me I've tried a lot of drugs.
          I wish you well RA is no joke.

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            Brenda Durhamposted 3 years ago in reply to this

            I know it!   It's been kickin' my butt for a while now.   So the Humira worked?  I think I may ask the doc to switch me to Humira, or some other med.
            But not an infusion of Rituxan.  I found too dire of a warning about it online.   It can cause some form of brain cancer, and there's no remedy for that particular type of side effect.    So I'm thinking Rituxan hasn't been tested enough yet or something.   And even if those problems occurred mostly in people who had been using it long-term,  I'm still very leery of it.

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              Writer Chuckposted 3 years ago in reply to this

              I agree. I think that one in five hundred thousand came up with this irreversible brain infection. I believe in going slow as there are a lot of meds on the market now for RA.

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                Brenda Durhamposted 3 years ago in reply to this

                Yep.
                I'm gonna tell my doc that I can't see any valid reason to try the Rituxan.    I'll be a guinea pig only so far;  I'm drawing the line at a medicine that's so scary and impossible to clean my system from if it starts to have unremediable side effects.    Gonna tell her I'm willing to switch from Enbrel to Humira or something more controllable.    Maybe I'll change my mind later;  but I doubt it. 

                I'm bumping this also because I haven't seen you around since your post in this thread,  and wonder how you're doing, Writer Chuck?!
                Good, I hope!

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                  Writer Chuckposted 3 years ago in reply to this

                  I'm doing fine now. The last three weeks I've been afflicted by a bug that really put me down.  Today I feel almost human again.  I had really forgotten how I should feel when I'm feeling good.

                  I hope you are doing better. RA is so painful when its out of control.  I hope Humira works as well for you as it has for me.  Life is too short.
                  Let me know how things are going. Keep up the good fight Brenda.

                  Chuck

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                    Brenda Durhamposted 3 years ago in reply to this

                    Thanks Chuck.   You too!   I'm glad you're over the bug.   I know what you mean-------it's been 2 years since I actually felt "good" as in normal.    I have bad days and better days, but not really good days.   Yet I'm extremely grateful to the Lord for every day, no matter what.

  2. donotfear profile image91
    donotfearposted 3 years ago

    Just wondering, guys; have your symptoms ever worsened with the long term use of steroids?

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      Brenda Durhamposted 3 years ago in reply to this

      Hello lady!  smile

      I don't think mine have.
      So far, steroid (Prednisone) is the only med that takes away my pain and swelling to any degree.   The first year into this illness (it's only been two years),  I was on a Prednisone regimen and I hit a time where it seemed like I was in a form of remission.   But the steroid is so strong and dangerous that my doc kept cutting the dosage down.   Only 4 days after I went off it entirely, my pain and swelling started coming back.   Since then, I've been on and off it and with differing dosage regimens.    Right now I'm on 10 mg. per day and my major pain is subsiding a lot.   But the stiffness and swelling is staying.  And  I can't stay on the Prednisone continually.   Eh....I might have to, though, since nothing else has worked.........

      I suppose, too, that one can become immune to the steroid.   Is that why you asked?   Do you know of cases where the steroid made symptoms worse?

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        Writer Chuckposted 3 years ago in reply to this

        I have been an RA patient for more than 25 years.  Prednisone won't work long term and will eventually kill you. it damages your organs in the long run. You need a Rheumatologist. This is a visious disease most Doctors don't understand how to treat it.  I wish you luck in finding the right doctor and a medication that will work in your body. Some meds work for some people but not others.

        Good luck

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          Brenda Durhamposted 3 years ago in reply to this

          I do have a Rheumatologist,  in addition to my family Doctor.   I see her regularly;  she makes me have regular blood tests and other labs before she'll even prescribe my meds.   She seems to be doing everything by the book and as best she can.   She's always tried to wean me off the Prednisone while starting me on other meds.   I've been on the whole gamut of regular meds for this, none have worked.   
          Yes, I'm finding out how bad this RA is.  The medical community, I think, is doing its best.  When I started on the Enbrel, the Enbrel Support people were very compassionate and helpful;  said their goal is to keep people from developing deformities in their hands and other limbs, etc. and easing their pain.   I believe them!  They provide me with the medicine at almost no cost (well, my insurance provides it of course).   But they're fighting a losing battle so far;  at least with my condition.  You're right--- I don't think they know what to do next.   Neither do I.   But I do know I'm not ready to try the Rituxan;  that sounds worse than Prednisone;  especially since I can stop the Prednisone at any point in time.   But I recall the times when I was off the steroid and had to crawl down the stairs;  and that scares me too.
          I'm taking it one day at a time;  some days I can stay active most of the day;  other days, I don't get out of my pajamas 'cause I need to rest most of the day and can't even get started in the morning.   I have an exercise video I work out with (need to do that every day but I don't),   and I use warm/cold packs to try to bring the swelling down. 

          Well, you know how all that is, I'm sure.   I wish you didn't, 'cause it would be nice to not experience this disease!   

          I have a neighbor woman who's about 10 years younger than me.  She has RA, and has Lupus along with it.   Knee replacement has already been recommended for her.   Before I knew her well, I used to wonder what was wrong with her, 'cause she said she wasn't well, but yet ya couldn't see anything wrong with her.    We talk sometimes and try to make each other's day a little better.   This, like many diseases, is what I call an "invisible illness" that many people can't relate to.    (Well, it's invisible until the swelling and deformities show!)     
          I will say this------it has made me very much aware of other people's pain.   I now never dismiss it when someone says they're hurting,  mentally or physically.

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            Writer Chuckposted 3 years ago in reply to this

            Hi Brenda,
            I responded this morning to a post by I thought was "donotfear".
            I know that you are well educated on fighting RA. I guess I was confused but that's not uncommon for me lately as I'm still feeling the effects of the bug I was suffering from. My post was intended for those who don't have the benefit of a doctor that understands RA.

            Humira stopped the joint damage that had occured in my hands after about three years of use. Now if you look at my hands you can't see any difference between my hands and a healthy person's hands.  Humira has been great.

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              Brenda Durhamposted 3 years ago in reply to this

              Hi again.
              Oh it's okay;  I understand.   Yeah, I thought donotfear would've been back by now.  She's also a Christian and I always look forward to talkin' to her wherever she shows up!

              Can I ask you, if you remember,  how long it took for the Humira to begin to work?    I'm so glad it's working for you and has stopped that damage!    I'm wondering 'cause I already have some damage in one hand,  and I've been on the Enbrel for 7 months.   I'm thinkin' it should've started working by now if it's gonna work.   The doc said it can take up to 6 months to start working......... 
              So, could you tell pretty soon after you started the Humira that it was helping, or did you just stay on it and it finally showed good effects?

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                Writer Chuckposted 3 years ago in reply to this

                when i went on humira the first thing I noticed is that I had a noticeable drop in flair ups almost immediately.  The blood test came back with better numbers with in the first six months.  My hands showed improvement within the first two years.  Humia has been great for me, that doesn't mean that it works for everyone.  I hope that you have the same success as I have had. It's worth a try.

                I pray that you will have the same success as I had.  All we can do is have faith that God is working on our problems and he's in control.

                Chuck

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                  Brenda Durhamposted 3 years ago in reply to this

                  Chuck!
                  I'm so sorry I'm late replying.   I'm waaay disorganized these days.
                  Thank you so much for your empathy and for talking with me about this!
                  I hope you continue to do well.   Yep,  God is in control and that's so comforting to know.  smile

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                    Writer Chuckposted 3 years ago in reply to this

                    Hi Brenda,
                    I just hope you're OK.  RA is a heavy all consuming problem to deal with. We will continue to pray for you, I hope you keep me in your prayers as well.

                    Chuck

 
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