I have been on this for 5 months now. I have not experienced any side effects -other than the lower WBC which is to be expected. So far, I have felt the best that I have felt in years. I have had MS for 12 years and started out on Avonex and then Copaxone. Gilenya is like all of the others- it is not for everyone. It is working for me and I hope it continues. The main thing is that you have a good confident Doctor that you trust in helping you make the right drug choices.
I have not heard about Gilenya being pulled off the market and am positive that my doctor would not continue to have me on it. Like the others that have made comments on this article- it has helped me. I trust my doctor- he is one of the most reputable in our area. All drugs have their own batch of side effects. Some are worse than others. One has to decide what weighs out the most.
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I was in the TRANSFORMS trial for Gilenya (then Fingolimod) which was a double blind study that compared the drug to Avonex.
While in the study we were monitored very carefully. During randomization (or first dose) we were observed for 6 hours, given an EKG before the dosing, had our BP and HR taken hourly, and then wore a holter monitor for 24 hours.
While Gilenya has the potential for serious adverse events, it is also an amazing drug with the potential for dramatic efficacy. Everyone's experience is different, naturally, and it's not right for everyone.
I was unblinded in December 2010 after completing the study and extenstions. I found out I had been on the .5mg dose (the current FDA approved dose) since the very first day.
Before entering the trial in Aug. 2007, I had been relapsing at a steady rate of 3 - 4 times per year with usually a 3 month recovery period. Basically, I was in one stage or another of a relapse all the time. This had been going on for 8 years.
I have not had a relapse now since April 7, 2007 -- I just had my 5 year relapse-free anniversary last month. Fortunately I have not had any serious adverse events.
I feel the important thing to take away from this news is that you need to be proactive as a patient. Inform yourself of the risks and benefits of any potential medication you are considering, and make sure your doctor is informed of any health conditions you have or of which you have a family history. Not everyone is a candidate for every medicine.
Only by staying informed can your doctor make an educated recommendation. We as patients need to stay proactive, stay educated, and be our own advocates.
Wow! This is some incredible insight. Obviously when writing the piece, I was merely reporting on what the news release was about. However, when you put a human spin on it, it changes the scope of the report entirely.
Overall, you would take the drug again, I assume? Do you take it now?
5 years without a relapse! Wow! I am sure that there are quite a few MSers out there who are willing to have extensive heart monitoring in exchange for that kind of success.
I started Gilenya by Rx the day after the extension phase ended. I haven't missed a single day.
I have done so well on it that I have never regretted getting into the trial and news of serious adverse events do not make me think twice about taking it. Even aspirin can have serious adverse events; there are risks with every medicine. You just have to make a personal choice and decide what you are willing to risk. Fortunately, I have not suffered any adverse events other than a mild increase in UTIs during the first 6 months of treatment which tapered back off. I did have a drop in heart rate on initial dose of 14 beats per min. which recovered by the end of the 6 hour monitoring period.
It works well for me and I have no plans of changing.
I blogged the entire clinical trial from start to finish and you can read about it here: http://gilenya.blogspot.com
That's really great to hear! I'm glad it's working for you and I will most certainly check out the blog. Thanks for commenting.