UCD Study for G for PPMS

[catmama]

Hi all,

I just wanted to let those of you who are interested in the clinical trial study progress of Gilenya for PPMS, that I will be attending an informational event next week regarding Gilenya.

I have attended quite a few of these events and with the exception of the first MD who really went into the possibilities of Gilenya for PPMS and actually admitted that he did have multiple PPMS patients on G, I have been very disappointed with the last 2 "expert" speakers. One MD stated that he would not discuss anything other than RRMS, period. And the last rep was not aware that there were ANY clinical trials going on for PPMS, she read straight from the overhead trancperencies(?) and that was it.

I am so excited to be attending the meeting next week, the "expert" speaker is just that, an expert on PPMS and I do believe, the Chief of Neurology from UC Davis, one of the 2 sites in California that has been conducting the clinical trials for G for PPMS. The end point isn't until 2014, but I'm sure he'll have more information to provide on the progress than most neuros since he's directly involved in the clinical trials.

So, just to let you all know, I am in no way shy or apprehensive about asking questions, even the ones that may seem somewhat foolish. I already have my list of questions going, so IF THERE IS ANYTHING YOU'D LIKE ME TO ASK, PLEASE, PLEASE LET ME KNOW. I would be happy to monopolize the whole meeting if necessary to get my questions answered, and report back to all of you. I am a retired RN, and spent much time working in trauma, specifically neuro trauma, and although I can't remember everything about the brain and CNS, (thanks MS), I still seem to know what I am talking about in an intelligent manner and assert myself with my knowledge I did manage to retain!

The event is scheduled for Wednesday, August 1st at 6 PM, so get those questions or comments coming to me!

Happy Sunday to all!!!

[lori]

catmama,

I'm very interested in what they had to say. I'm dx'd PPMS and have been on symptom only meds for 10yrs after interferons and copaxone didn't stop my progression.

I'm hoping they had some positive results. Sorry I didn't see this earlier, I would have loved to know what this epert had to say about immunosuppression in general vs PPMS. I seem to remember reading years ago that it had little effect on progression and why G may have benefits that solumedrol, novatrone, rituxan haven't. At my dx in 1993, research indicated PPMS and RRMS may be different diseases and 20yrs later I assume even with the lesion differences they don't want to put us out there on a lonely island with no research trials with prospects of $4000/month treatments that they can get approval for with RRMS.

Thank you for doing the hard work for us. It's good to know that you are willing to get in there to fight for answers. I bet you were a good RN.....giving those MD's a piece of your mind!
lori