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Worse after Avonex?

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  • Worse after Avonex?

    I couldn’t handle the pre-mixed, still do the lyothelized. The evening I do my shot I take extra strength Tylenol at 4pm, 8pm, two aleve at 12, and one more aleve the next am. I no longer ever feel side effects like I used to, and don’t think my body temp climbs. But the next day my marginal function tips to the other side of bearable, complete with frustrated shrieks and assertions I never will do this again, though I’ve only ever actually quit twice in 12 years (Imagine all the scar tissue in my thighs.)

    Does it affect anyone else like this (tone and weakness worse)? The problems themselves are due to actual spinal injury, not inflammation, didn’t appear until 30 seconds after falling, despite eight years of an MS diagnosis.

  • #2
    Do you still have RRMS or is it now SPMS? Keep in mind that the evidence is best for the use of the immunomodulating MS drugs for those with RRMS. Regardless, you have to balance out the signficant side effects most of the immunomodulating agents have against your incidence of exacerbations or progression of your disease. Have you discussed options or even stopping with your neurologist?

    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


    • #3
      I'm not really sure what I have. The last time I saw my neurologist at Penn -- who's now out of network -- she called it relapsing progressive I think, or something new to me. But she never bought that I had any mechanical involvement, of which by my experience I have absolutely no doubt at all. Despite two controversial incidents in 1996 and 1997, I’ve never had what I would identify as a discrete exacerbation. I just got steadily worse, until surgery made me better, and then falling made me worse still. I take the stuff to hedge my bets, in case it helps. I tried copaxone briefly but found it too much of a hassle. My doctor says I can’t have the PML-related one because I’m already disabled. So I guess I’m just waiting. I get worse only for a day.


      • #4
        Have you you tried the IVIG therapy for MS? I was reading through and thought this may be of help to you if you wish to take a second medical opinion - in addition to your current doc. It is always good to confirm the treatment with multiple expert opinions instead of sticking to one if you do not see much result.


        • #5
          I think Samantha has a good suggestion re: the IVIG therapy. I have to say I wa just on it for 5 months. I had to quit because it made me sick and I now have been going thru another relapse of the MS.....however....I have gotten to be very good friends with the nurse that does the IVIG and she has had many patients who have had much improvement with it and it may be worth a try....I really think you should ask your Dr about it or like previously said maybe get another opinion. I have relapsing progressive wishes....Debbie


          • #6
            Thanks Samantha and Calideb. I admit I'm confused. IVIG sounds only like the delivery method, and I can't figure out what actual drug they are talking about. I've gotten all kinds of IV therapy -- steroids that just destroyed me for months, vitamins, colchecine. Is it Novantrone, the chemotherapy drug? My doctor suggested that to me awhile ago and I was not very excited about it. If I were totally convinced it was MS that was doing this to me, maybe I would go there. But my hair already is falling out. Did you notice that side effect? I remember there were others that contributed to my decision, though I don't remember what they were. How did it make you sick? Do patients actually improve or just stabilize?