Please see this for the actual verbatim report from the Archives of Neurology.
http://archneur.ama-assn.org/cgi/con...rol.2010.257v1

Two things to take note of:
1. "Overall, relapses occurred more often in younger patients with fewer natalizumab infusions prior to therapy interruption."
2. Many of the patients with rebound activity had "disease refractive to multiple therapeutics before starting natalizumab treatment." In other words, these were people with aggressive MS from the very beginning who failed on other drugs.

When and if I go off Tysabri, my doctor has a plan. I will be off Tysabri for 90 days before starting a new drug (which will likely be Gilenya). However, on the 60th day of this 90 day break I will be given one dose of IV steroids at 1,000 mg. The steroids are designed to limit risk of inflammatory rebound during the transition.

Sounds as though your doc will be well prepared should you decide to stop Tysabri.

With only 32 patients in this study and a variety of disease level, I hope their findings are indicative of what to expect. Whatever your decision, I hope it works out well for you.

Harry

ECTRIMS news about the JC assay

http://ir.elan.com/phoenix.zhtml?c=8...3366&highlight=

Well, I had infusion #24 today. Generally no
problems except a headache and fatigue when I got home. However, a woman getting IVIG in the infusion room insisted on leaving in the middle of her infusion, got argumentative with the nurse and doctor who was called in and tried to pick a fight with another patient. She ended up leaving and things calmed down.

I'm most likely going to get #25 (my last infusion) in Dec. and then I'm off on vacation abroad. No word still on the JC virus test at my clinic! Of course if I can get access to it and I test negative I will stay on the drug.

I have to confess that the latest PML case has freaked me out a bit given that the woman with PML has been posting videos on YouTube and her husband is now keeping people up to date with her status online (see the flowers4ms facebook page). I guess when you put a real person together with the disease it makes it seem more real and frightening. I wish her well.

Sorry to hear that you STILL haven't gotten word on the JCV testing yet, Natalie!

Overseas for Christmas?? Any room in your suitcase? :p

For those who want more info on the woman doing youtube vids who has PML, here's a link (thanks Sal!) I haven't watched it because I'm still on dialup and it's slooooooow! I'll have to wait until I am in an area with a hotspot and can check it out so if someone else watches and can review, please post.

http://www.youtube.com/v/X4aOG2UJDFA...</param><param

I had # 45 yesterday, got moved up a day on both infusion and MD appt. AAARRRGH!
I went in with 2 hours sleep, I was late but got infusion early enough to make it to the neuro on time and he was running late! I slept for a few minutes during infusion, got a lovely lunch and it was as usual, no problems, no concerns on my end.

No drug holiday talk, did the times walk for Ampyra and was told I have the fastest time out of all their pts. on Ampyra, talked a bit about ECTRIMS and the PML cases since last appt, talked about reducing my appts. back to 6 month intervals, but decided to stay at 3 months for now. I am still the only negative result out of everyone tested in his practice, pondered yet again who is positive and negative and how transmission happens, talked a bit about Gilneya, he says a LOT of his patients have called to ask about it, med center is setting up where pts will be monitored for their first few doses, sounds like it's going to be monitored at every step.

Life is good! Hope everyone's doing well! :grouphug:

I had my AZ neuro appt today at which I became part of the stratify trial. I was told I would find out the results in 5-6 weeks.

My neuro does not believe in CCSVI but when I asked for the vein MRI she said she would order it for me. She said beyond that I would be on my own.

On Dec 3rd (which happens to be my 62 birthday :)) I will get my 51st infusion

HAPPY Thanksgiving !

Linda

Happy early birthday Linda! Congrats on the 51st! I'm glad you are also pursuing the CCSVI angle.

Glad to hear that you FINALLY got into the trial and had the test! Good to hear you are doing well! Good Luck with the CCSVI MRI, please let us know how it comes out.

As Natalie said- Happy Early Birthday!

I had my 39th infusion on November 12. It went well and I had the normal side effects. However, I don't know if I will continue with the infusions next year. I do plan on getting an infusion in December of this year...that will be #40 for me.

I've been told by Biogen that there is no one in Nevada who is qualified to do the blood draw. My neuro gave up jumping through the hoops that Biogen was constantly putting in her way. A Senior Tysabri Leader at Biogen is attempting to find a place in California for me to go for the PML study. It has to be within a reasonable drive because we go to California every 6 weeks to see our grandchildren. That is a 7 1/2 hour drive for us. I would love to be able to go somewhere while we are in California and cut down on the driving time. The drive itself is becoming exhausting and the stress of not being able to get the blood draw is taking a toll on me. If Biogen doesn't find a dr somewhere in California that is within a 4 hour drive of my daughter's house I'm giving up......that would be an 8 hour round trip drive :( Airfare is simply too expensive. I'm running out of options.

I hope that everyone who celebrates Thanksgiving has a wonderful time with family and friends.

hugs to all,
Shayna

Shayna,
Sorry to hear you are still getting the runaround from Biogen! I cannot understand why they would tell you something like that.

My doc is in a 25 bed medical center, not some giant teaching hospital. All it took was a blood draw and the sample to be shipped overnight to the selected lab. It's not rocket science. The office nurse did mine, along with 3 other samples, and they were shipped that day in a cooler with an ice pack.

It appears Biogen still has their head stuck where the sun doesn't shine when it comes to Tysabri patients. You'd think they would have learned after all these years.

It's time to start agitating them again.I have letters and calls going out!