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I feel it is necessary for me to relate my reaction to Copaxone with everyone in this forum. I am currently dealing with Prim Prog MS. Let me state at the outset that I have also had problems with MS injectable Rebif. I used Copaxone for close to two years after having elevated liver panels with Rebif. At first Copaxone was very well tolerated with the only side effect being site reactions, lumping and itching. Within a year, almost out of nowhere I started experiencing reactions almost immediately post injection: beginning with symptoms of high fever, chills, shortness of breath and tightness in chest. The reactions got so bad that we decided to return to Rebif, although within a couple of months my liver panels skyrocketed again. So back to Copaxone...hoping that I would not have any further trouble. Trouble returned soon enough, as one night my wife injected me in the leg, almost instantaneously I knew what was happening and warned my wife that this one was going to be bad. This one was violent to the point where I was fighting for air and was looking at my wife like this might be the last time I saw her. I asked her for air but she could do nothing. I was moved to the bathroom, my son called 911 and I lost conciousness for some time. I woke up in an ambulance and spent the night in the hospital, where the reaction finally dissipated. That was my last sojourn with Copaxone and I am now on Cellcept, which I seem to be tolerating very well. With regard to Copaxone, please remember this was only my allergic reaction to the drug. Perhaps you may have a successful course with the drug. But if you are having an increased reaction to the drug...like the woman who has to hold on to her husband for dear life...I believe you are playing with fire. I think daily about how I am going to succumb to this disease and that is not the way I want to go. My brother Jim died from complications to MS back in 1989 after a tremendous fight with the disease over 17 years. I think of him daily and continue to try to fight his fight.
Paul (martae@comcast.net) |
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“Peace through light, not might” Joined: Apr 6, 2008 Comments: 2829 St. Paul ISP: Woodville, WI |
Paul, you could be writing my story! My full anaphylactic reaction happened 11 months into treatment with Copaxone, and not only was I in respiratory distress like you, but my body was covered in literally thousands of hives and my face and neck swelled up to the point of my husband almost not recognizing me. Scary experiences, huh? When Teva called me for a follow-up (I guess our doctors must have had to report such violent reactions) I was told that my case was one of the worst four on record. At the time I thought, "This has happened to three other people?!" I suspect it's happened much more often than reported to the general public. Glad to know you're having better luck with Cellcept. I'm in a clinical trial for laquinamod and so far managing my decline. My wishes to you for a smoother journey, and to your wife who, like my husband, is affected by the disease in ways I can't even imagine. Zen |
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