I have 3 new lesions on Ty...

[22cyclist]

It is definitely time to get off of this drug. When they did my spinal MRI I had a new lesion at C3, C5, and C8. The C5 they said was causing my TM. All of this time on Ty and I had no new lesions, then I get all the way to my 35th infusion and BAM! Three new lesions.

I have to get off of Ty anyway my JCV index is 3.5, so perhaps I am going to get Lemtrada next.

I know this is a progressive disease, but Tysabri spoiled me, now its back to the reality of MS. Too Bad.

Lisa

[MSW1963]

22c, I'm sorry to hear it's the end of the road for you and Ty, considering te recovery you, me and many others actually experienced over the course of infusions. But with so many new lesions, plus the number of infusions you've had, I guess your number is up.

I'm so sorry.

[KatieAgain]

I'm sorry Lisa...I really am. I know how much you liked TY.

I like TY too. I also am going to be coming off the drug sometime next year or next flare...whichever comes first. And I will be doing Lemtrada.

If it makes you feel any better, my MS Specialist, who is also a researcher had 20+ patients in the trials. So far they ALL have been doing well...no major side effects.

You need to make a decision soon.

[jreagan70]

Bummer! Did your neuro say it's too late for plasmapheresis? Any possibility of getting a monthly IVSM pulse until you can get on Lemtrada? Cellcept until then maybe?

[pennstater]

So sorry to hear. I know how disappointing the news must be. I wish you good luck as you come off Ty and then start your new medicine.

I have always admired your strength and adaptability. You are an inspiration. I am still on Ty, but know at some point my time will come. I will thank you ahead, as I will continue to learn from your experiences.

I hope and pray your adjustment goes as well as can be.

[22cyclist]

Thank you all. Its too late for plasmaphoresis, Dr. Markovic-Plese just wanted me to drop me off and hope I don't get a big rebound reaction. I think I have to wait a couple of weeks to start the Lemtrada after the Ty, but I may be wrong.

I don't remember what she said. That is SO common. I can only take in a certain amount information
before my brain gets wasted. I go back on Monday, so I will report back in what she wants me to take.


Lisa

[BadAttitude]

Thank you all. Its too late for plasmaphoresis, Dr. Markovic-Plese just wanted me to drop me off and hope I don't get a big rebound reaction. I think I have to wait a couple of weeks to start the Lemtrada after the Ty, but I may be wrong.

I don't remember what she said. That is SO common. I can only take in a certain amount information
before my brain gets wasted. I go back on Monday, so I will report back in what she wants me to take.
Lisa

Neuros do things their own way, but my personal experience with switching from Ty to another DMD (Gilenya) was to get a course of three days of Solumedrol after stopping Ty, then waiting for the steroids to wash out for a month, then starting Gilenya. When Gilenya bombed a year later, they again put me on steroids for the resultant relapse, waited for the Gilenya to wash out along with steroids, then scheduled me for Lemtrada.

I finished the first round of Lemtrada (see my post on the Lemtrada board if you want to know what to expect with a Lemtrada infusion (Your mileage may vary ) and am doing reasonably well. Of course, I was in a full blown major relapse when I went in for the Lemtrada and the steroids they administer along with Lemtrada helped clear up the acute relapse stuff. It is hoped the Lemtrada prevents the relapse stuff as a more long-range strategy. I hope you see good results with the Lemtrada.

[Thinkimjob]

Was never a great believer in the long-term efficacy of Tysabri, but if you got three good years out of it, then that has to worth something.

You're fighting this thing as hard as you can. All the best.