I had a reaction to my Tysabri infusion today. Nooooooo!!! I'm so frustrated, I need this medication! Not sure what happened, I just suddenly couldn't breathe or think or talk or see straight. All the muscles in my hands and arms were clenching up. It was pretty awful. Fortunately, I was getting my infusion at Mercy Gilbert, so they took me straight to the ER. I was there for almost five hours, they gave me Benadryl and Baclofen, did a CT to check for a brain bleed, and after awhile things started to calm down. Barrows was at the ready to have me transferred and admitted, but I really did start improving after several hours, and I HATE sleeping over at the hospital. I couldn't be more relieved to be back home now.
Still feeling like I got hit by a truck, but the most frustrating thing is not knowing if I'll be able to continue with this medication. I really need it, and I'm afraid of next steps without it. I'm really hoping my doc will let me try this at least once more. Blah.
Oh Mandy I am so sorry, glad you were at the hospital and are okay. Stay strong, you are amazing!!!!
ReplyDeleteMy wife had anaphylactic reaction on her 18th infusion and ended up in the ER also. Since then, she now takes 25mg Benadryl at home - an hour before infusion - and then gets IV injection of Benadryl as well as IV Solu Medrol (a steroid) immediately prior to Tysabri infusion. She'll have her 61st infusion tomorrow.
ReplyDeleteThanks Kristen :)
ReplyDeleteAnd thanks to whoever shared this info about Benadryl. I am so glad to hear that is a possibility. I am hoping my doctor will let me try it. Glad to hear your wife has been able to continue her treatments, hope she is doing well!
Oh man, Mandy! I am so sorry to hear this. I am constantly praying for you. I hope they can come up with a solution to help you get what you need. I'm here if you need anything.
ReplyDeleteMandy:
ReplyDeleteCaveat!
My wife had another allergic reaction today with her 61st infusion. Her Neuro attended to her and then ordered a series of 9 blood tests including one to test for anti-Tysabri antibodies. Despite the pre-IV Benadryl and Solu Medrol steroid, they had to halt her infusion half way through it. She was flushed and disoriented and had mild vision problems. I took her by wheelchair to the lab to have the blood work done and we'll know something tomorrow. Tysabri is the most effective and powerful drug in slowing progression of MS (68% reduction in relapses - no other disease modifying drug (DMD) comes even close). But Tysabri has it's own dangers. I don't want to discourage you from staying with the drug - it has been a wonderful and effective therapy for my wife for 5 years - but it does have it's risks.
What is this anti Tysabri antibody? I've never heard of it. I'm still so horribly sick today, and my neuro doesn't know what to do for me. Maybe there is nothing we can do. Thanks for sharing this info, I'm so sorry to hear about your wife. I hope things improve for her soon. Please keep me updated. Mandyclive@gmail.com
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