I've been in the trial nearly 10 months and while this is scary news, I'm not going to get all panicky about it. The trials (there are several) for Fingolimod represent the largest in the history of MS drugs (an estimated 1250 in my particular trial alone) and there are bound to be complications for a few patients.

We don't know what the infections were caused by or if they are even related to the use of the drug.

The benefits of having been on this drug have far, far outweighed any side effects I might have experienced.

Known side effects that I personally have had so far are:

Drop of 14 bpm in heart rate on initial dosing which was over after 6 hours.

Increase in UTIs in the first few months, no UTIs since month 4.

Increase in upper respiratory infections initially (5 head colds in first 6 mos.) none since.

Since being on the drug the benefits I have gained:

I'm made it to 1 year with no relapses; prior rate was every 3 months.

My EDSS has drastically improved.

My QoL has drastically improved.

Wonderful health care which does include many examinations. With such close observation I am optimistic that if anything were to arise it would be detected and dealt with very quickly.

While it's only natural to gasp in horror at this tidbit of news, I'm not letting it get to me. We don't have all the facts and if the independent experts who monitor the study did not feel it necessary to halt the trial then I don't feel it necessary to pull out.

After all, if I have been on it for nearly a year and gained so much, healthwise, from this experience, I'd be shooting myself in the foot to back out without having any proof that the medication was the direct cause of the death of the patient involved.

I would hate to see this thread be biased by only having people who are not participating in any of the studies for FTY720 scare off anyone who has been seriously considering entering one of them.

Until all the facts are in, I'm not forming an opinion or getting scared away.

BTW, you may wonder why I just popped in now to post this and haven't said anything in months. LOL I get Google Alerts that let me know when anything with the words "fingolimod" or "FTY720" pop up on the web. I got an alert with this thread in it and decided to come give an alternate point of view.

Hope everyone is have a great MS day! Stay well...