Tysabri

[Landellet]

I do not have typical ms, but a variant that is still clinically not diagnosed. I have a great neuro @ Stanford & he is recommending I start on Tysabri ASAP. I read up about the JC virus, and regardless plan to begin treatment next week. I don't know anyone with ms or ms variants so I want to know more about Tysabri from people who are on it or have used it. What is your experience? Pros/cons? I have read about side effects but I want to hear your thoughts & how it made you feel.

[Landellet]

Yes, I had lung biopsy, not sarcodosis. My lung nodules are asymptomatic but grow & changes along with flares. Never a cough, shortness of breath or anything. I am glad to share this info if anything to see if there is anyone else out there like me. :) BTW I am 28, w/f with my initial symptom being TM in 2006.

[Lulu54]

I'll ask the obvious question here, just in case this wasn't obvious to your doctors-  have they tested you for Sarcodoisis?  Huge MS mimic, but often involves the lungs.

I sure hope you stick around and share more because you really have my curiosity up right now.

[kwarendorf]

I'm about to start Tysabri. I know there are some risks, side effects etc, but I trust my new Guru. If he thinks this is the way to go, then I'm going :-)

[Landellet]

Wow thanks! I know the dangers of researching medical conditions online (seem to always find the bad stuff) so its nice to hear some good stuff. I of course am worried about PML especially since I am currently on Prednisone & also revieved Rituxan less than 4 months ago. The reason I don't have clinical ms is because I have lung involvement, ms never leaves the CNS & never effects lungs. I have also met with a NMO specialist and while although quite similar to my disorder, still not it. I currently have large spots of inflammation in my brain which has caused me to have 2 seizures in the past yr & a half. One while I was pregnant with my son @ 16 weeks (scary! Put me into labor & luckily they were able to stop it) So I am anxious/excited to start Tysabri.

[rendean]

Hello, and welcome!
I have had 5 infusions and no problems other than the normal changes in the bloodwork that are expected. I feel much better on Tysabri especially the 2 middle weeks. the week before the next infusion, I start to slow down.

No reason to quit on my part. I really like Tysabri!

Ren

[Lulu54]

If it helps, we have no one here who has stopped Tysabri because of problems, as best as I know.

Welcome to the forum - I hope you are around here more.  I would really like to hear more about the variants.

be well,
Laura

[Cosmobirdy]

We have a thread here with Tysabri patients discussing their experiences on it.  Here is the link: http://www.medhelp.org/posts/Multiple-Sclerosis/Tysabri-Users---Past-and-Present/show/1569374?controller=posts&action=show&id=#

If for some reason that doesn't work, just put in "Tysabri users past and present" in the search area at the top and you should find it.

I go for my 40th infusion tomorrow.  Feel free to PM me if there's any way I can help.

Bye for now,
Rita

[Sumanadevii]

I just had my fourth infusion.  I love it!!!  No side effects here...NONE!!