After 3 infusions of Tysabri, I had a wierd allergic reaction to it that caused phisical panic attacks where my body would sort of freak out and shake and hypervenelate put of nowhere and my WBC count soared over 25,000. I was advised to go off until the counts went back to normal which took a couple of months. Now the neuro wants me to restart the Tysabri infusions ASAP. I am scared the same thing will happen again. Why wouldn't it? Any advice. (I was allergic to Copaxone and others and is why i was put on Tysabri)Thanks, Jen
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Q: After 3 infusions of Tysabri, I had a wierd allergic reaction.
Answers (1)
5/ 5/09 11:53am
Jen! Seriously? Go back on it? I wouldn't for all the tea in Burbank. You give no details regarding your stage, years of DX, symptoms, so my best answer is see another Dr., Tysabri is new, there are other drugs and what was the Dr.s reasoning for it being OK to go back on? Just my opinion, but I say get thee a SECOND opinion from a MS specialist (and by that I mean a neurologist!) Hope you feel much better soon.
5/ 5/09 9:06pm
I had a "leader in his field" (MS) neuro who pushed Copaxone on me, one day I asked if Teva paid him to promote their drug; he said and I quote, "Yes." Just fyi---and you are NOT stupid, dont ever let a mere mortal make you feel he is greater than YOU!
5/ 5/09 11:12pm
They absolutely are paid to promote it. I know my neuro is not evil, but the ego is so huge as is the research hospital, and there is not really any personal repertoire with him. The head nurse is the only person who I have seen the past 4 years, and she left the week before they started me on Tysabri. I won't be taking it again anyway. Last infusion was almost 4 months ago now. WBC count is finally back to normal, and I don't want to feel like a lab rat again. Going to continue for a while with a more holistic approach with positive attitude, vitamins, diet, exercise and consider later what other options there are. There aren't many MS neuros around here that are not part of the MS Center where I go.
Be Well and thanks for the advice and support!
Jen
5/ 8/09 9:22pm
clearly i need to proof read my letters. repore not repertoire
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Thanks for your response! I know what I wrote seems like a big DUH. I just wanted to see others opinions because my neurologist is considered to be a top leader in the M.S. field here in Colorado and makes me feel stupid and wreckless for not re-starting it.(can't go on avonex or copaxone because of allergic reactions to them) I did go see a hematologist and my internist, and both said stay away from the stuff, but the neurologist says that he does not think it was the Tysabri and if it was then he wanted to give me other meds to control some reactions, even though Biogen said they too agreed with the allegic reaction once the symptoms were reported to them by me.
I have had probable MS since Oct o4 when I had transverse Myelitis and was checked every 6 months with an MRI until last April 08 when I had a bout with optic neuritis. Definitive diagnosis then of RRMS. Otherewise, my symptoms are wierd risidual feeling around eye, tired and a spastic bladder at night.(I have Detrol for this) Thanks again for responding. I really appreciate it.
Jen:}