This Is MS Multiple Sclerosis Community: Knowledge & Support

What looks like positive news:

http://c.moreover.com/click/here.pl?j17 ... 2&w=464753

Thanks Ian, that's really encouraging news. I was hoping that the lower 0.5mg dose would prove to be just as good as 1.25mg, and it looks like it might even be better. Also, it is encouraging that the deaths were both in the higher dose group, so there is hope that the lower dose won't cause dangerous infections. Who knows, but it looks good at this preliminary stage.

I remember reading that FTY720 may have some further benefit in reducing disability / increasing repair. Has anyone seen anything from this 12 month study with information on EDSS's etc?

Haven't seen any other info on the endpoints Cure. Another article made a point that I totally agree with though...



The higher cancer incidence is a huge concern. How about a post-approval/phase 4 trial of 0.5mg vs. 0.25mg?

for the rest:
http://www.borsaitaliana.it/bitApp/news ... 70&lang=en

Interesting that 0.5mg is seemingly more effective - and to think this drug was originally dosed at 5mg (10 times higher!). If 0.25mg is effective, then who knows - even 0.10mg might work.

Agree that the skin cancer is a cause for concern - especially melanoma.

From my understanding, FTY720 works by keeping the lymphocytes in the lymph nodes, thereby reducing the lymphocyte count in their blood. I am sure they would of been monitoring the participants lymphocyte count during this and previous trials, so has there been any publishing of this information?

I would be interested to see if it has been measurably lower counts in those on the lower or higher dose? and if its lower / higher on those that are "responding"? If it does not correlate as you would assume (ie higher dose, lower count etc), to me it would seem this drug has some other line of action they do not yet fully understand. Which is a good thing.

I remember reading that this drug may also have a neuroprotective role (as well as immunosuppresive) - so that may well be the case.

Yesterday, I received an e-mail from the research coordinator at my MS Clinic who said she would like to talk to me about eligibility for the PPMS/FTY 720 Trial, with expected screening to take place next month. That was the news I needed to start the Year with! I have been looking and looking for info on FTY 720 and repair but only know what has been said on this forum.
I doubt Novartis would sink money into a PPMS trial unless the research substantiates it. Then again, rituximab trial was a bust for PPMS and I thought there was a lot of supporting evidence it would work for progressive disability. Who knows, but I feel a hopeful glimmer.

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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 />

You are right!
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The trial you´ve mentioned is INFORMS:
http://clinicaltrials.gov/ct2/show/NCT00731692

Some news about FT720:
http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1309

Keep my fingers crossed, Smilingface!

For those who are interested: I have been on the phase lll study for FTY720 which ended for me in Dec. 08. I am now on the extension phase which compares two doses of the same product.( 0.5 vs 1.25). I received a call today by the study nurse to tell me that my lymphocytes were low. That is exactly what my GP had found at my check up last year. So, I must have been on the real drug last year and the results are the same as now.
I am feeling just the same except that it seems like my walking is just a bit easier. I clear the floor more often , more easily with my left foot.
I am not getting excited since this disease is so unpredictable and this could just be the illness easing up a bit.
In terms of side effects, I may be having short lasting, very mild headaches, which I did not have before. Otherwise, nothing... I am still going to give it some time then make a decision... I do not have too many other choices.... oh well, will let you know... I might just try the antibiotics...
By the way, I take also 80mg of Lipitor per day, about two glasses of wine per day and she said nothing about my liver enzymes... great!
Will keep you posted...
Take care and happy new year again.. Carole

Just to close the loop. I am now off the FTY720. It did nothing for my ms. I am probably spms but it is suppose to help there too. All because my white cells where too low in the extension phase and I did not want to play the yoyo game of on and off the meds depending on my white cell count.
The bad news is that there is nothing else out there unless I tried the big guns and I won't because I want to keep on working so... I will limp along... One day I will decide that this has gone on long enough and I will change my mind. In the meantime, I visit this site often still looking for THE treatment and I remain on my dear Lipitor. That's it.. Later,,, Carole

Carole, I’m sorry to hear it didn’t have any benefit for you. I’ve been reading your story from the beginning, and I’ve been pulling for you all along. Please know that I, and I’m sure many others, are so grateful there are people out there on all the different trials because without you, we wouldn’t have any of the treatments that are available today or hopefully in the future. Thank you. I only wish that after everything you went through you would have felt better in the end.
N

Needled said it really well. I'm sorry that it didn't work for you Carole. I'm glad that Lipitor does work though.

thanks for the support, Carole

Carole, you have truly been an inspiration to me! You have helped me to be realistic with my expectations as I enter the trial. I was supposed to have my screenings this week but the trial coordinator said things have been postponed due to paperwork. They have hinted it has something to do with
the budget. I first heard that FTY 720 would be tried for PPMS a year and a half ago, I guess I can wait a little longer. Your experience has made me nice and calm about the wait and the reality of a placebo or a drug that may not do anything for 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 />