Ty #1...... now I’m down 😢

[4krobh]

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

[jimeka]

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 🦋 🍫 🤗

[4krobh in reply to jimeka]

Thank you @jimeka !! I hope so too!!

[Morllyn]

I’m Sorry, hopefully things will be better soon.

[4krobh in reply to Morllyn]

Thank you!! How was your day?

[Morllyn in reply to 4krobh]

Good day for me. Hope today is better for you.

[greaterexp]

I sure hope tomorrow is a much better day. Keep us posted.

[4krobh in reply to greaterexp]

Thank you!! Feeling a little better after spending some family time together. How’s your weekend?

[greaterexp in reply to 4krobh]

I’m glad you’re feeling better. My weekend is going very well. Thanks for asking.

[Kenu]

I was on Tysabri for seven years and only side effects was fatigue for a day and half afterwards. Sure hope it was a hiccup 🙏 Hang in there 👍. 🐾 Ken

[jackiesj]

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...

[bxrmom]

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 💞

Jessie

[Juleigh21]

I’m due for dose 31 of tysabri next week. I luckily have never had a negative reaction to it. I wish you well! Hope you’re feeling better today!!

[bpriddle]

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

[4krobh in reply to bpriddle]

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?

[JeanieU in reply to 4krobh]

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).

[janetb1968]

Hi hun I'm on Tysabri have had 4 infusions so far and have been ok but I know it can cause reactions in patients xxx

[4krobh in reply to janetb1968]

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!!

[Amore55]

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

[4krobh in reply to Amore55]

Ahhh darnit! I hate that for you SO bad (that you can’t find another) Prayers going to that SOMETHING will help!!!

[Amore55]

Sorry, I tried to say “titers” in previous post, computer changed it to tigers! 😅😊