Well; I had my first Tysabri infusion on Wednesday. It was pretty uneventful which I am grateful for. Although the nurse did say “reactions usually come after infusion #2 or 3”. Ekkk!
My problem began yesterday; I had a severe anxiety attack (that has not happened in YEARS) and had to leave work.
I also began taking Norflex (at my request) for Spasticity in my legs and numbness in my feet; I had taken two doses when that happened yesterday—and I’ve been terribly depressed and feeling “off” since.
Hoping maybe it was just the muscle relaxer that caused the hiccup and NOT the Tysabri?!?!
Terrible day yesterday; baaaaaad day today. Just feeling down, darnit
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4krobh
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I can’t comment on the effects tysabi has on people, but I know ms can make you feel great one day then, oh, such a downer the next, hopefully these feelings will be short lived. Blessings Jimeka 🦋 🍫 🤗
I am hoping you feel better soon.Sometimes any little change will throw me off and so fingures crossed.Some muscle relaxers just made me feel not right...some got better with time.Know thisLwe all care and wishing you well, and more good feeling than not.Be gentle on yourself...in whatever is normal rollacoasters we do ride....together...
I'm so sorry you feel that way right now, hope its not your infusion causing it. I have no experience with it, I'm sure others with comment with their side effects. I hope you can get some relief soon 💞
I started tysabri in November. It takes 3 treatments for the drug to start having any affect. I did have some what I called flushed feeling after my infusion. Taking baclofin Keprin oxybutynin. I personally have not seen any major side affects of tysabri. The baclofin and keprin on the other hand I believe are the culprits behind my focus and concentrating newly diagnosed in October of last year so don’t have much experience with the Ride we are all on. I guess like I read on this blog everyone has different symptoms and various stages of progression. I do which my diagnosis had come sooner and treatments started earlier. My 1st spinal tap was not tested properly at the lab. Initial diagnosis was a possible mild stroke. So no treatments for roughly 9 months. 2nd spinal tap made then another 3 months for results and insurance approval before treatments started. Hope you are successful with Tysabri moving forward. Aw
Wow!! You’ve really been through the wringer!! Baclofen didn’t seem to help me in the least bit 😥
I’ve heard lots talk about the spinal tap; I never did get One; my Neuro based my dx from MRI and blood test to rule out Intimidators.... has everyone here had a spinal tap as part of diagnosis?
We didn't have the spinal tap either. The spine and brain MRI were fairly conclusive with multiple lesions, and the neuro we went with also did an eye exam (can't remember if it was ocular or macular) which also showed signs of MS. We're awaiting our first Ocrevus treatment, I think in August. Waiting for approval. (I say "we" because my husband has it but he's not tech savvy and I devour information, so I feel like we're a team in this).
I THINK and am hoping maybe it’s just anxiety about the brain infection thing. Every time I forget a word or get a tingling or numb sensation I think “PML, PML!!” But I had all of that BEFORE I had the infusion; it’s funny how quick we forget what we’ve already been through!!
I was on Tysabri for six years and just loved it. I am even jc positive and had it all that time. Finally my tigers (risk for PML) got too high and they pulled me right off it. It has been all downhill since then, cannot find a med that agrees with my system. I hope you do great on it. Sorry you are doing the rollercoaster thing, that stinks. Will keep you in my prayers. Love, Kelly xx
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Ocrevus disappointing up to now
