Help Me! Help Me! I'm on Tysabri!

Welcome...your call may be monitored to insure you receive the highest quality of service. Please listen carefully to the menu options: Press 1 to receive full prescribing info. This will take 10 min. & you won't end up knowing anything more than you already know. Press 2 to hear the Black Box warning. This scares the hell out of you. Press 3 to talk to a live body, no matter what their title is, they are just an office clerk, who will put you on hold, then return in a couple minutes, saying they CANNOT HELP YOU & you should ask your doctor. (Been there, done that.) My doctor has a similar complaint when he calls. Where is the REAL Help Line for this medicine? I am out alone in the world of Tysabri. Help!


Anonymous said...

deej, I am not a dr., but I've had 8 Tysabri infusions since 10/06, 9 as of this coming Wednesday the 13th.

Perhaps I might be able to answer a few basic questions you might have re: Tysabri, but I might also ask you, "what is your neuro calling Biogen for? And have both of you read Tysabri's label fully and carefully for the answers you seek?".

I highly suspect the answers you both are looking for are right there under your nose(s), i.e., Tysabri's label...just a hunch on my part. I don't know for sure (shrug)

deej said...

Is that you, Lauren? You found my alter ego, darn it! My neuro is calling Biogen because he is in the T.O.U.C.H. program and they told him to call if he has questions. They have a special "doctor line", you know. I ask him a question, he calls Biogen/Tysabri & finds out nothing just like I do. So sorry about your dear cat. Hope your infusion went well.

deej said...

Question = Can I safely get a flu shot while on Tysabri? My doc couldn't get an answer, so he told me not to do it. Can I safely get Prednisolone/Solumedrol while on Tysabri? I insisted on getting 3 days of 1,000mg IV in Jan. with 10-day taper on pills for a flare-up. And I'm still alive! Now I'm going to go ahead with an epidural next week for my back. I'll post again if I survive!

Lauren said...

Yep, it's me... ha ha. Thank you so much for your condolences.

As to your question for getting a flu shot while on Tysabri, I get mine every single year. I just time mine so that it is approximately 2 weeks after my Tysabri infusion in order to give my body and opportunity to build up antibodies to the flu shot (doesn't make much sense to get them beforehand, know what a mean?) ;)

As to your question about getting steroids while on Tysabri, you can, HOWEVER, you cannot receive them concomitantly pursuant to the Touch program. Normally, you have to wait approximately 30 days after your steroids to receive Tysabri thereafter. This is to ensure that your immune system does not remain in a compromised state from the steroids.

Remember, it is always best to check with your doctor.

Hope this helps! All my best, you know-Ha!

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Anonymous said...

I keep quoting these dead white guys for a reason. We seem to be repeating some particularly nasty history, right now.