I want to shout it out!!!

[CGMoonbeam]

Good to hear!

[Over50]

Smilingface
It is great to hear your story. I was only diagnosed 4 months ago and have been on Gilenya for 2 months. I haven't seen any noticeable improvement yet. The side effects have been minimal and easy to deal with. I'm hoping that the weakness in my right leg (which led to my diagnosis) and the fatigue will improve soon. I am in he "planning my retirement" phase now, but your post gives me hope.

[fayeellen]

Gilenya

That is such a positive experience. I have read nothing but the dangers and warnings from peers and articles. Thank you for sharing. I see the doc next month and have plenty of questions.
Thank you so much for sharing with me!

[Smilingface]

Can you explain to me how this med worked for you?

After 3 months of entering the trial my energy greatly increased, at one year my motor exams started showing slight improvement in strength, now at two years my ability
to exercise has greatly improved and I am no longer walking with a brace. Prior to entering the trial my ability to walk was slowly but steadily worsening and the fatigue was debilitating. Two years ago I was planning my retirement, today I am thinking about what I can do to boost my career.
A very different path in this journey! Hope that answered your question.

[fayeellen]

Hello Smilingface

I just hung up from my doctor. He actually feels it's Secondary Progressive MS now! But feels there are studies that showed positive results with Gilenya. I am continuing with my tests to see if I can take the med. Have an optic nerve test to go and am scheduled for the Derm on May 1.
Can you explain to me how this med worked for you?

[Smilingface]

Shout it out continued.....

Hi Fayeellen,

I was diagnosed with PPMS in 2006, in March 2010 I entered the Gilenya trial for PPMS. Gilenya has been a positive experience for me. I hope it makes to FDA approval for PPMS, meanwhile I feel fortunate to have access to it.

[fayeellen]

Back to Jerry

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?

[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]

Gilenya

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.

[Thomas Jackson]

Thanks for sharing. Great news always welcome.

[metwo]

YAY I'm happy for you!

[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!