Tysabri Rebound Effect

[MsKitty]

I'm currently experiencing the rebound effect, it is very real!

I had 51 infusions of Tysabri, I felt like a million dollars for about 4 years.(No exacerbations) I tested positive for JC virus in August, I got the results 2 hours after having the final infusion. My doctor strongly advised stopping right away due to the fact I had also taken Methotrexate years before. (Very high risk of PML) I'm a very play it safe person, and I completely trust my doctor's opinion, so I stopped. August 16th was my final infusion. I started Rebif as quickly as possible, but, not quick enough.

I started the Optic Neuritis a couple of weeks ago, vision decreased slowly, then this past Saturday, I woke up to 95% of vision gone in my right eye. I emailed my doctor and he saw me right away, he admitted me to the hospital,where I had several tests.
Two days ago I had a tunnel catheter put in by my right clavicle, I had my first Plasma pheresis treatment yesterday. Aside from getting dizzy and almost throwing up and being extemely tired after, I'm glad I did it. The pain is almost gone this morning and I feel like I might be regaining some vision. I'm scheduled for a few more treatments, so, I am very hopeful to regain my sight. My doctor wants me to get started on Copaxone as soon as possible. That's the one injectable I haven't tried yet, so I have my fingers crossed.

Has anyone else experienced anything similar? By the way, I can't take steroids. Steroids, taken in the past have damaged my bones severely! I have to have an ankle fusion surgery within the next few weeks, so that I have a chance at keeping my foot. Two different surgeons have said it might have to be amputated. Needless to say I have found a third surgeon, he is the best in this field.

Lisa

[0485c10]

Thank you lisa for posting of your experience--i have none to offer but i am like that "know it all" school girl that always has something to say...with your past use of mithotrexate i can see why your doc wanted you to stop asap...as that was the best road forward, even if it is a rocky road.

i have an rss feed to the abstracts in the Multiple Sclerosis Journal. I don't have a subscription so i only see abstracts and have to conclude the subject is important enough for the abstract.



Recently there was a title...

Dramtic worsening following plasma exchange in severe post-natalizumbab withdrawl multiple Sclerosis relapse.

Multiple Sclerosis current issue

Papeix, C., Depaz, R., Tourbah, A., Stankoff, B., Lubetzki, C.
Yesterday, 5:27 AM





the abstract goes on to describe a young woman with MS who discontinued Ty twice, each time having a severe relapse following ty withdrawl.

the first relapse was successfully treated with IV steroids(IVMP).

the second relapse was unresponsive to steroids, subsequent treatment with PLEX(plasma exchange) was followed by dramatic neurological worsening.

The case suggests that PLEX after ty withdrawl may increase relapse severity.


Just wanted to share what i read yesterday, in the abstract. So you have the information and fewer unexpected surprises if they happen.Her experience may be nothing like yours---but i do think both you and your doc have moved forward in the only path you could have taken.

It sounds like your not out of the woods yet but close.

keep us updated on your experience so we can gain from your experience. my thought and prayers are directed toward you that you have ridden out the worst of the storm

[0485c10]

The Rocky Moubtain MS--too late for you--but others who read your post will see this reply---did trials on starting copaxone and letting it build up before stopping tysabri.

tysabri and an interferons cannot be taken to gether but it was thought copaxone could be used in conjunction when stopping TY.

I did not see the results of the trial, i just read they were trying it a few years ago. Maybe that would be a possibility for those stuck in the same type of sticky situation you found your self in? Anyone heard of thoe trials and any result from them?