This Is MS Multiple Sclerosis Community: Knowledge & Support

I know, I know, the news has already been posted in a couple of other threads, but I just wanted to highlight one thing that I think is a great idea (I think the FDA panel stole it from me, I'm sure they're all dedicated readers of the thisisms forums)



for the rest of the article:
http://www.google.com/hostednews/ap/art ... QD9G8K4BO0

Thanks, this was an article I had not seen. It would make sense just to add a lower dose arm to the ongoing trials. I think there is a possibility I am on the placebo, so I would like to see a re-randomization where I would either get .5mg or the lower dose. Sounds more ethical to me!

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

Sounds like a good idea to me. That would get an answer a lot faster since the existing trials have already recruited all of their participants.

Hi Dignan,

Actually, the trial I'm in is currently recruiting. I know my study center is trying to come up with 10 participants who qualify. It's the only site in NC and in a large city so I have been a little surprised how long its taking to fill the slots.

Am I correct that there is still an extension study going on with RRMS and FTY720 with .5mg vs 1.25? Or is everyone to date getting .5mg?

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

Hollie from the Acclerated Cure Project posted the link to the info presented to the FDA on Gilenia.

An interesting read--I only took a glimpse but think I'll take a definite pass.

FDA info on FTY 720 (Gilenia)

It's almost 400 pages so takes a while to download.

Sharon

Sharon, thanks for the link, I'll have to check it out.

On the ongoing RRMS studies (I guess they are extension studies), I THINK participants are all now getting 0.5mg. From what I can see in clinicaltrials.gov, that's how it looks.

Smilingface -
I am in SC, not far from NC - can you give me some information on the trial? Are they still looking for patients?
Thanks!

Hi ScGirl!

The study I'm in is at the CMC/MS Research Center, part of the Carolinas Healthcare System in Charlotte. The contact person is Rita
Rouse at 704-446-1902. I'm pretty sure they are currently enrolling with a plan of having 10-12 patients.

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

Thank you so much Smilingface! That's actually funny.. that's where my neuro is and I have never heard of this study. But that's par for the course for me.. Thanks again! And not sure if you are a college baseball fan, but the South Carolina Gamecocks are playing in the College World Series, you should check it out!

Has anyone started on this yet? My neurologist at the MS Center is really trying to push this on me.

Hi Bewitched,

I started taking fingolimod seven months ago. I feel better than I have in years. So far the only negative side effect I have had is a drop in my lung function. (That's why I know I'm not on the placebo) I have had some annoying side effects -- mild headache, runny nose, mild nausea.

I think my progression has leveled. I'm hoping for signs of repair and re-myelination but nothing to date.

Fortunately, since I'm in the trial I don't have to figure out how to pay for it!

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

God, I hope you do O.K. on this. I am so uncertain. I have fears about the side effects and I have a career that I can't afford to lose. I need to be functional at all times. Also, I am a smoker. I'm afraid my lungs will collapse on this stuff.

Thanks so much for replying. I needed to hear from someone who is actually on this stuff. And, are you sure this is not placebo? When is this trial going to end?

For the first 3 months of the trial I wasn't sure at all, although I had the mild side effects of headache, nausea and runny nose. But then stuff started happening --- the energy gain, the call from the neuro that said I had to go in for extra pulmonary function testing because my lung function dropped 20% below baseline, my cholesterol level shot up, then leveled by itself (presumably because my liver was over worked) and I had a UTI (Last one I had was 18 years ago). Yes, I'm as sure as I can be that I'm on the drug. This trial ends December 2013.

I'm comfortable with the side effects because I know I am being monitored carefully. Except for going to the study visits, I have not missed a day of work for a year.

Good luck in your decision! There's a public forum on facebook for those trying to decide whether or not to go for gilenya. You might find it helpful.

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

I guess this is a question for the mods, but should Gilenia have it's own forum folder with the others as it is now an approved treatment?

Mods, that would be great. How do we do it?

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />