Hi,
I have been part of the trial of Fingolimod for almost 2 years now. I love the drug.
First I was Betaseron, later on Avonex. The injections where not that bad, the side effects where killers. I lost 2 days where I had to stay in bed and I was sick, sick, sick.
I never got used to the interferon and it did not get better and to top it off, I still had one or two major attacks a year. So when my doctor asked me to join the trial I was most interested. I had no flare ups in almost 2 years. I have improved 33% and I am hooked on the drug. I signed up for the 3 year follow up.
The cancer, somebody in Phase II developed skin cancer. Was it from the drug?
That is why we see a dermatologist on a regular basis and he checks our whole body for lesions.
I am very proud to be part of this study, the drug has improved the quality of my life.
Dr. Kantor,
You neglected to mention the lack of efficacy regarding the CRABS! Not only do I hate injections and their side effects, but I hate the fact that the CRABS just don't work...So yes, I am taking the risk of PML now, as I have had 42 doses of Tysabri, all the while exacerbation FREE!! It is looking as if Tysabri and Gilenya are 2X as effective in preventing exacerbation at the 2 yr marker. I'll take those odds any day!!
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Dr. Kantor,
This has got to be one of my favorite posts so far. Thank you for bringing together brief references of the highly signficant trials which have occured so far. This saves me from having to hunt for my lecture notes from annual workshop my neurologist conducts for his patients.
Example: I was trying to come up with the PreCISe trial the other day and I couldn't remember it's title. Thank you.
I am very encouraged to hear updates on Fingolimod as a friend is in an extension trial and hasn't had a relapse in well over a year after having had a horrible time with her MS for the 9 years prior. She's hooked!!
I'm curious. What is the history of the fungus which is the basis of Fingolimod? Was it used previously in TCM specifically for patients with CNS symptoms? Or what is it's current use in Chinese Medicine?