I want to shout it out!!!

[jmm9503]

I just wanted to share my good news with everyone. I just received a copy of my latest MRI (3/27/12) and it is "completely unchanged" since my MRI of 5/26/11, which was unchanged from 10/10. I started Gilenya on 12/15/10, and this is now my 2nd MRI in 12 years with no changes. I can't say that Gilenya is definately the reason, but I always had an interval change on Copaxone. I'm planning on staying on Gilenya for a long time!

[metwo]

YAY I'm happy for you!

[Thomas Jackson]

Thanks for sharing. Great news always welcome.

[fayeellen]

Hello to all. This is my first time posting here and I have been reading your replys on the med, Gilenya. I was diagnosed with Primaray Progressive MS on my last visit to my neuro. He wants to change my med from Avonex to Gilenya. But it is my understanding that there isn't a med out there for PPMS (?)
I would like any input you may have on my situation, please.

[JerryD]

fayeellen,
I also have been dx'd with PPMS and I have spoken to at least 7 neurologists, in various venues. From what I gather, there is no FDA approved medicine to specifically treat PPMS. That is not to say that your neurologist doesn't have the option to 'go off the reservation'! If the drug is FDA approved your neurologist can prescribe any drug s/he wants.
My neurologist tried to get me to take one of the injectable DMD's, but after reading up on the negative side effects, I passed. You may be in a similar situation. I hope you do much research before you make your decision. Either way you choose to go, I wish you well. Good luck

[fayeellen]

Thanks Jerry. I have been investigating this drug since he mentioned the word Gilenya. I have many new questions stored in the iPhone to ask on this next visit next month. Right now I am going through all the tests to see if I can even take it.
Do you know or heard of anyone taking meds for thier PPMS?

[CGMoonbeam]

Good to hear!