Announcement

Collapse
No announcement yet.

Another Bad Night on Avonex

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Another Bad Night on Avonex

    I have been on Avonex more years than I can remember and I have always had a problem with the flu like symptoms. I take the medication late in the afternoon on Sunday (best time for me schedule-wise) so these symptoms hit me late at night while I'm trying to sleep. I also have trouble with nausea the day after and of course, being exhausted since I haven't slept.

    Last night was a final straw. After 2 hours (by my husbands count) of body aches, teeth chattering chills and night sweats, I decided I can't take it anymore.

    My MS is mild by comparison to some, mostly cognitive, muscle tightness and of course, tiredness. I also have not had any changes in my MRI's in years.

    I'm weighing the pros and cons of Avonex and right now the cons are winning.

    Any ideas from the group on alternative medications or therapies would be appreciated. I have also asked my neuro and am waiting on her response.

    #2
    Sorry you're having so much trouble with it. That does sound awful. I'm guessing you're premedicating and repeating the dose after a few hours? Have you tried using something stronger? I've heard some say that acetaminophen does nothing but naproxen really helps.

    As for other meds, all interferons run the risk of the flu-like side effects. Copaxone, on the other hand, doesn't have that. You also don't have to do the monthly labs in the beginning with Copaxone like you do with interferons. It seems to be a safer drug. People say that you do get stinging/burning sensations immediately after injecting, but from what I hear, most tolerate it pretty well. I've never taken it though, so I can't really tell you much about that. Whatever you do, I hope you find something that really works for you. Good luck.
    Diagnosed 1/4/13
    Avonex 1/25/13-11/14, Gilenya 1/22/15

    Comment


      #3
      Avonex has served me well for almost nine years. Nights like you describe were common in my first couple months of treatment, but rare since. And I’ve never had nausea in the aftermath of an Avonex shot. However, I have known a few others who can’t tolerate the side effects in the long term, and I’m sorry you fall into that category.

      We have many tools available to us. Another interferon might not be your first choice, but Copaxone has a strong safety profile over time and is a common choice for people with mild MS. It can have side effects, but they are different than those of the interferons and you may be better able to tolerate or mitigate those.

      Tysabri works well for many people. We have the newer oral drugs Aubagio, Gilenya, and Tecfidera (which could be approved by the FDA this week). Although all pose the threat of side effects, please continue to fight your MS with one of these tools! You write that your MS is mild … it’s likely that Avonex, your current tool, deserves some credit for that.

      Comment


        #4
        Thank you for responding and for the naproxen idea.

        I am happy to say I heard back from my Neuro and she does agree that these Avonex side affects have gone on long enough.

        She agrees that my MRI's have remained very consistent but she is concerned with managing the cognitive (my biggest issue) which she said is not as easily measured. So I need to move an already scheduled appt. with her so we can discuss my options.

        I'm so relieved. I'm especially relieved that next Sunday I can just go to sleep and not fear waking up in the middle of the night with flu like symptoms and not go through 1/2 my work day on Monday in a nauseated fog.

        Yay!!!

        Comment


          #5
          I have been on Avonex for 8 weeks and I feel horrible. Like I'm in a fog all day and dizzy all day. Am I the only one? Seen my neuro, he prescribed Nuvigil which did not help at all, going to my family dr this week maybe someone will help me. I feel worse the last few weeks, not sure if its the meds or the MS?? UGH soo frustrated!!Anyone feel weird on this medicine??

          Comment


            #6
            Originally posted by NLay View Post
            I have been on Avonex for 8 weeks and I feel horrible. Like I'm in a fog all day and dizzy all day. Am I the only one? Seen my neuro, he prescribed Nuvigil which did not help at all, going to my family dr this week maybe someone will help me. I feel worse the last few weeks, not sure if its the meds or the MS?? UGH soo frustrated!!Anyone feel weird on this medicine??
            Are you newly diagnosed? If so, it's hard to tell what's what. You'll have to rest and bear with your damaged nervous system as it makes sense of itself. Keep with the medication if you can and don't expect to feel normal for the first year. No medication will do that, but healing and the natural process of getting used to different feelings in your body.

            Comment


              #7
              Hi Big A,

              I'm not newly diagnosed. I've known about my MS for 18 years and I was on Avonex for the last 6 years because my doctor noticed a change in the size of the lesions in my brain. The Avonex has kept those lesions in check.

              With my doctors guidance, I have now been off the Avonex for two rounds of dose. I am feeling strangely more alert, energetic and well, my husband noticed my libido seems to be back as well. I'm no longer dragging myself to bed at night and I am having less trouble getting through my day. I'm actually feeling better.

              For me it seems the cure may have been worse than the disease. However, that doesn't mean I'm turning my back on medication or that my choice is for everyone. It just means clearly even though I gave it a 6-year shot because of the lesions, Avonex wasn't for me.

              Comment

              Working...
              X