Gilenya feedback. Diagnosed Relapsing MS 4/16/15.

[NewlyDx]

I had a traumatic brain injury when I was knocked down by a parking gate May 2014. I was told I had a concussion, then concussion syndrome as dizziness, unbalanced and pain continued. 1st MRI showed some lesions with demyelination suggestive of MS. Neuro called it Radiograph MS; and did not want to treat it as I didn't have symptoms other than above. I had 3 falls since with no obvious reason for fall - just feeling of ground being pulled away from me. Tore my hamstring badly in 2 places on last fall 6 months ago. Repeat MRI with no changes in lesions.

Past month I felt more off balanced, numbness right foot then noticed right hand grasp weak with numbness finger tips. Then both feet numb and incontinent of urine one night. Difficulty concentrating, sometime articulating words and super tired. 3rd MRI showed numerous high T2, high FLAIR, new T1 bright lesion at C6-7 and ischemic changes with demyelination.
Diagnosed with Relapsing MS April 16, 2015. Took high dose prednisone 1200 mg/ day for 3 1/2 days, could not complete 5 days because of severe side effects. Currently awaiting insurance approval to start Gilenya. What is your feedback on this drug?

[SNOOPY]

Hello NewlyDx and welcome to MSWorld.

You may want to ask about Gilenya on the medication forum.

This is the link to the Gilenya:
http://www.msworld.org/forum/forumdi...php?93-Gilenya

Thanks for introducing yourself!

[BadAttitude]

Well, crap!

Dear NewlyDx:
Sorry to read about your incident and subsequent kick in the pants. What a way to find out you have MS. . They say bad things happen in threes...I'll cross my fingers for you that doesn't prove true for you!

I was placed on Gilenya for a period of one year after my neuro told me he was uncomfortable with me continuing to take Tysabri due to the length of time I'd been on it (7 years) and the level of my JC virus titer. That's all probably gobbledygook to you since you're a newbie and all, but here was my experience with Gilenya: It did not work for me.

Disclaimer: I am not knocking Gilenya. It is what it is; Sometimes, the drugs work for people and sometimes they don't. For me, Gilenya did not. I had two severe relapses within a year, both disabling and more severe than at any time in my life. I gave it the old college try, because it was a new drug to me, and because it was the appropriate choice given its efficacy rate and the fact that it was the next powerful drug out there after Tysabri.

The side effects I experienced while on Gilenya were not insurmountable but they WERE unwelcome. I'm a vocalist, and the reported side effect of lung symptoms did affect me. I developed a constant feeling of lung congestion and it felt a bit like I was drowning- a low grade drowning, but unpleasant to be sure. They had to take me off of Gilenya to wash it out before I went in for Lemtrada when IT became available in 2015. (Thank GOD. So far, so good on Lemtrada.) Your mileage may vary...that particular side effect of Gilenya is not common.

*Sorry to hear you could not tolerate steroids. They've always been my magic bullet for the acute symptoms of a relapse. I hope they still are, in case the Lemtrada doesn't do its job.

That said, I agree with your neurologist to offer you Gilenya- it seems appropriate. I would advocate for you giving it an honest shot, because the stats for it are promising, and the fact that it is an oral drug is a definite plus. If you should find that you continue to experience disease activity while on Gilenya, at least there are alternatives.

I don't know what your neuro's treatment philosophy is, but mine is aggressive. He is of the school of thought that "time = brain," meaning you'd better nip the disease activity as soon as possible because you don't get your brain back once it's damaged. I am so glad I ditched my last neuro because of his laissez faire attitude. Even if you heal up from a relapse, you now have scar tissue you didn't before, and it's likely to be more severe with each relapse.

An ounce of prevention IS worth a pound of cure. I know, because my steroids infusions and rehab therapy have cost me more, personally and in $$, than my Tysabri infusions ever did. I loved Tysabri. I never had side effects with it and I always felt as good leaving an infusion as I did walking in. I sure miss the peace of mind I felt while on it, but for the record...Lemtrada is shaping up to be side effect free for me as well. I only hope it is as good as Tysabri was for me.

Oh well, not trying to bad mouth Gilenya. I know it's worked well for others. I hope it works well for you.