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When to quit Avonex?

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    When to quit Avonex?

    I've been taking Avonex for 8 months now, and I'm concerned that it is the reason for my horrible fatigue (it started within a couple months of me starting Avonex). I also had a pretty rough summer, with my right arm randomly going completely numb (started in July, 5-6 months after starting Avonex) and right after that, I developed double vision from far away. The double vision pretty much disappeared and after a month, came back with a vengeance.

    Before being diagnosed, I went at least a year between flares. All of this trouble came 7 months after my last flare. It makes me feel like taking the Avonex is just a waste of time, and talking to my neuro about it would be pointless (for this reason, I'm currently trying to see an MS specialist since he actually knows what he's doing while my neuro obviously doesn't). Have I given Avonex enough time to see if it really just isn't the right DMD for me or should I give it some more time?
    Diagnosed 1/4/13
    Avonex 1/25/13-11/14, Gilenya 1/22/15

    #2
    I’m sorry you’re going through this. I don’t think you can blame the Avonex for causing what sounds like heightened MS symptoms. The numbness followed by double vision really sounds like an exacerbation that might have warranted IV steroid treatment.

    You can blame Avonex for allowing the exacerbation to happen, but neither Avonex nor any other DMD is foolproof. And I’m not sure five or six months really is enough time to fairly evaluate any DMD.

    If you’re getting on board with a new MS specialist, it’s probably best to stay with your treatment until you receive his guidance, and perhaps an MRI might offer some direction. Even if it’s not helping you, I don’t think the Avonex is hurting you, other than using it keeps you from using another DMD. But you wouldn’t start another DMD until you see the MS specialist anyway.

    Comment


      #3
      Hey Istrl,

      I see that you are on the Amantadine as well. I currently take Amantadine and Avonex. I take the Amantadine once a day at 100mg. My nuero said that there may come a time when I need to bump up to twice a day because one can build up a tolerance to how it helps with the MS fatigue. I have read many other postings on the web about people who have had to increase or take a few weeks off to "reset" their tolerance level. Just thought I would mention it. I hope things get better, as I know how miserable the fatigue can be.

      Ella

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        #4
        Avonex and exacerbations

        Hi Istrl,
        Sounds frustrating to have a flare just when you think it might have been the last and starting a new promising drug. I began Avonex about 12 years ago. Several months after I began, I too had a flare. My neurologist told me that it sometimes happens after starting Avonex. All was well after that. I am thankful not to have fatigue from Avonex except the day after I take a shot. I just started the Pen last week! It was better than my husband having to give me a shot (I'm a wimp).
        Good luck to you, glad you are going to see a specialist. We sure are a specialty group of folks. Keep up the fight.
        Alison

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          #5
          I was on the avonex and amantadine combo.
          I as taken off avonex after a year and moved to rebif because there were a lot of new lesions and many active ones.
          I never seemed to need the amantadine on rebif and went off it.
          Everyone responds differently and there are a lot of choices now so your neuro shouldnt be too unresponsive to trying a different drug
          1995-symptoms with no cause
          2000-diagnosed with Probable MS.
          2000/1-started Avonex
          2002-Rebif b/c increasing brain plaques
          Nov-13-Tecfidera b/c needle fatigue&sympt

          Comment


            #6
            Hi lstrl,

            I'd give the Avonex a year before giving up on it unless you really can't tolerate the side effects.

            Who knows if your fatigue and other symptoms might have been much worse if you hadn't been on the Avonex?

            It's a gamble but the evidence is that it helps many people at your stage of MS.

            I'd had MS for nearly 30 years when I tried Avonex, and I did stay on it for 3 years on the offchance that it might help me even though I had had SPMS for many years. You should give it more of a try, I think.
            MEMBER OF MS WORLD SINCE 4/03.

            SPMS diagnosed 1980. Avonex 2002-2005. Copaxone 6/4/07-5/15/10.

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