Anyone go off tysabri after a long period on it?

[miz.mel]

Hi folks,

I have been on Tysabri since January 2002 (I was in the trial) for a total of 118 infusions to date, on Tysabri for 11 years. I have an MRI every 6 months with a follow up with my neuro. In December, 2011 I tested positive for the JC Virus Antibodies and chose to remain on Tysabri. My MRI has remained unchanged (no new lesions) since starting Tysabri and I have had no relapses while on it.

At the last appointment with my neuro in early May, he immediately started discussing an "exit strategy" to come off Tysabri. I was obviously taken aback. He explained that since my MS was relatively mild prior to starting Tysabri, and that I tested positive for the JC Virus Antibodies, it was time to consider other options.

I would love to hear from people who have come off Tysabri. I have read stories of people relapsing quite badly after coming off. Unfortunately, my appointment with my neuro is tomorrow morning (love those last minute appointments) so any information you can provide would be so greatly appreciated. He is considering starting me on Tecfidera.

Many thanks!

[stillstANNding]

MizMel - I have no information for you but I am interested in the answer.

ANN:)

[Lazarus]

Hi

I am on rituxan and Just a year ago tested positive for the. JC virus. I chose to have four infusions since that time because I am in such bad shape without it. My neuro expresses concern and hopes to switch me to something less dangerous. It really is a crap shoot...

Good luck

[miz.mel]

Thanks, Linda and Ann. I met with my neuro who was very supportive of whatever decision I make, yet stressing that he thinks I should consider coming off Tysabri. He comes to that conclusion for at least three reasons: being on the drug for so long, the fact that I tested positive for the JC Virus Antibodies, and what is considered "low weight" (anything under 134 pounds based on what I've read), since the amount of drugs in my system would be more concentrated. Based on the low weight theory, I have decided to receive Tysabri every 6 weeks instead of every 4 weeks, and will review my situation again in 6 months. Neither of us can say whether my MS has remained stable all these years because of Tysabri or because its merely the path my particular MS is taking, although at one point he did say "so the Tysabri is doing its job". Ah, the life of a guinea pig. I have also asked him to review my MRIs between the time that Tysabri was taken off the market in February 2005, and the time I went into the extension study in September, 2006, to see if there was any change in disease activity during this time off Tysabri, which would support the Tysabri Rebound Effect.

Fingers crossed things remain the same!

[agate]

Congratulations on staying on Tysabri this long, miz.mel. It sounds as if you and the neuro have the situation in hand.


No new lesions--that's always good!

[Pegakafarmgirl]

My problem was,{I was on Tysabri, for 5 yrs}, I relapsed while I was on it, neuro took me off it fast, and put me on Novantrone, which was working,, then they took Novantrone, off the market,{causes cancer},, I am more or less on nothing, I even did stem cell, which also cause me to relapse,,yeah,, I know,, weird,,

[agent107]

Long Term Tysabri Patient with JC Virus

I too have been on Tysabri since 2002 (part of clinical trial). I've tested positive for the JC Virus. Most Tysabri patients I know with the JC Virus have stuck with Tysabri. And I have too. My neuro keeps suggesting alternate meds but I, too, am no longer interested in being a guinea pig -- switching to the latest and greatest hot off the press. He mentioned that it has just been discovered that there is a spectrum of the virus. I'm in clinical trial for jc virus which involves a blood draw annually for three years. I will have a blood draw next week -- and will try to find out what i can about this supposed range. I'm on the tail end (I hope) of a pretty intense and scary vertigo attack with falls, etc. This is why I have logged on to the list after a long absence. (Oddly, I have had some taste aversions accompanying the vertigo -- for example, the smell of coffee beans at home sickened me -- I've never experienced anything like this -- does this ring any bell?) My MS has been reclassified from RRMS to progressive relapsing -- but I do believe that Tysabri has slowed my progression -- but what do I know . . . ?

Please excuse me if I have been redundant here . . . .

agent107

[agate]

Welcome, agent107! There was a member here named Agent a while back--that wouldn't be you, probably?

As for your question about vertigo, nausea often goes with vertigo, and it sounds as if your aversion to some odors is a variant of nausea.

I've had severe vertigo and it's a very miserable experience. Fell and knocked my front teeth out. I was only 20 at the time and had no idea what was wrong. I didn't know what vertigo was. I just knew I couldn't lift my head off the pillow even a fraction of an inch.

I've had a few more episodes of it since then but they weren't as bad.

Sorry to hear you've been reclassified. If I got this right, as long as you're still having relapses, they figure that Tysabri might be helpful, and if you have progressive relapsing MS, you're in that category of people who could benefit from Tysabri.

If you read Cherie's post in the Chitchat thread, the MS experts are talking about making Tysabri (and Tecfidera?) the first-line drug for early MS, instead of the ABCRs. That would be quite a change in the way MS is being treated.

Hope your vertigo will get better. Have you tried meclizine? It helps some people.

[Lazarus]

Hi Agent

Thanks for that interesting post about your trial on the JC virus.

I too have had dastardly vertigo. I wanted to tell you that I now use a skin patch that must be for seasickness. Anyway, I put it on as soon as I feel even a twinge of vertigo.Most of the time it heads off the vertigo. The patch is Trans Derm Scop. I put it behind an ear. I do not wait to get full vertigo before I put it on. If I have the slightest wave of vertigo sensation I put it on. This happens maybe once or twice a year..even less. I always hav patches on hand.

Take care

[miz.mel]

Sorry it has taken me so long to respond, I've been away.

Agent107, first and foremost, thank you for taking part in the JC Virus trial. My neuro never mentioned that there were various degrees of the JC Virus antibodies, but I'm very interested in finding out what that may be. I'm so sorry you're suffering so terribly with vertigo. I haven't had it myself, but know many who have, and it sounds horrible. I hope Tysabri continues to help you. I am now almost two weeks past when I would normally have my infusion, and I am dragging a bit, but it will be interesting to see how I feel post infusion on Monday.

Agate, I haven't read Cherie's post yet, but while talking with my neuro he said that if I walked into his office today there would be no way he'd put me on Tysabri. As far as I know, based on the cases of PML, it will not be a front line DMD for quite some time, but of course it depends on the presenting patient and the neuro. Like Agent, I lurve my Tysabri and hope to stay on it as long as I can!