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Posted: Sat Nov 24, 2007 2:46 pm Post subject: Discontinuing My Avonex Injections
Hi everyone - I've been lurking for awhile and finally decided to post. I just quit injecting Avonex two weeks ago after doing the injections for just about two years. I couldn't take the side effects any longer which after two years never really subsided. On my "good" nights I would experience all the typical flu-like symptoms but after every several "good" nights I would experience extreme side effects (uncontrollable shaking - convulsion like, headache, fever, chills, sweats, you name it) to the point of severe fatigue and exhaustion the following day. My most recent side effects were weight gain this past year and very bad chest pains the last month being on the injection. I was wondering if anyone else has expereinced weight gain and chest pains. I spoke to my mentor from Biogen Idec and she told me there were many reports of weight gain caused by an underactive thyroid which could be caused by Avonex (of course there are no published clinical studies). Also, the chest pains scared the heck out of me. I've been experiencing a lot of palpitations since being on Avonex but the crushing pain was something new. Also, since I've stopped doing my injections, I have now become sick with severe sinus congestion which has turned into a head/chest cold!!!! I realized while taking Avonex I never really had a cold or virus!! So anyway, I was just wondering if any of you experienced the same type of problems while on and off Avonex.
I have very similar experiences to you - some shots seem better than others, but many are really awful. I have been taking it for about 10 months now, and my neuro recently prescribed baclophen to help me deal with the worsening muscle spasms (there because of the ms, but much worse because of Avonex) and it helps with the ibuprofen, but nothing really takes it away. I have also just started eltroxin as my thyroid function is abnormally low (it was fine before I started treatment) - and I have gained some weight. Interferon can cause hypothyroidism, so this is an essential blood test while on Avonex. I am not ready to give up Avonex - I still hope that the side effects get better, and I have not had a relapse since starting it (I know this could be just the ms, but I was in a really downward spiral before). I also have not had any colds since being on Avonex!
Take care and I hope you get over your cold. _________________ Ali
I have very similar experiences to you - some shots seem better than others, but many are really awful. I have been taking it for about 10 months now, and my neuro recently prescribed baclophen to help me deal with the worsening muscle spasms (there because of the ms, but much worse because of Avonex) and it helps with the ibuprofen, but nothing really takes it away. I have also just started eltroxin as my thyroid function is abnormally low (it was fine before I started treatment) - and I have gained some weight. Interferon can cause hypothyroidism, so this is an essential blood test while on Avonex. I am not ready to give up Avonex - I still hope that the side effects get better, and I have not had a relapse since starting it (I know this could be just the ms, but I was in a really downward spiral before). I also have not had any colds since being on Avonex!
Take care and I hope you get over your cold.
Ally B,
Thank you so much for responding! BTW, my name is also Ally B. (but spelled Ali)!! Well I'm glad I'm not alone with the weight gain issue. I've put on a solid 10 lbs. since being on Avonex and never had thyroid problems before. Now I'm told my blood work is showing the thyroid peroxidase antibody is low. It's so frustrating. I really don't want to stop injecting the Avonex because I'm terrified of the reprecusions. My neuro told me it's not a matter of if, but a matter of when I suffer another exacerbation. But on the other hand I just can't handle the side effects anymore. It has taken such a toll on me I don't feel I am the same person anymore. So anyway, for now I will be taking a break from injecting and see how I do. Thanks for replying!
Ali B.
That is so cool...Let me know how you do off the Avonex - I may end up down that road myself if things don't improve (side effects ruin 2-3 days a week).
I gained about 12lbs over around 6 months - my thyroid screening test was fine, but my free T4 was way too low. I feel a bit better now on medication, but it has only been about three weeks, so a bit soon to expect miracles, I suppose.
I also never had a thyroid problem before and it has been tested a few times over the years (when I was first diagnosed - 8 years ago, when I was pregnant with both my kids, and before I started Avonex in Feb this year - all well, until end October...
Exacerbations are terrifying and we are all held captive by that spector, but there is no guarentee with interferons that you won't get a relapse - just hope! - so choosing quality of life now is not a bad choice, you can always start again if things go haywire!
Also new treatments are just around the corner, so hang in there....I have heard that Copaxone is better tolerated - less side effects? A break will probably do you good, and your choices can be guided by how you feel - I wish you well, and please send a post to let us know how you are.
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