Gilenya (fingolimod)

[Needtoknow613]

Just saw my new neuro today and I like her a lot.  She was very informative.  She summed up that I was having more issues with Avonex than MS.  She recommended that I switch from Avonex to Gilenya.  I like the fact that it is oral, but I would like to hear opinions from others.  I don't know much about Gilenya because my old neuro said that it was not for me.  I am in the process of reading all the stuff the neuro gave me.  Please respond and let me know what you think.

Michelle

[Needtoknow613]

Update on my progress.

I had my second MRI yesterday. It took 5 in a half hours!  They couldn't find a vein to do the contrast. Ugg  When I got done, I slept the rest of the day.

I am almost done with the evaulation for Gilenya.  I have recently completed most of my testing for Gilenya.  The only thing I have left to do is the eye exam.

Eventhough I am going through the evaluation, I have not decided to take Gilenya..  But, I am really tired of the shots and the multiple days of side effects.

I think I will feel better on a daily basis if I didn't take anything, but I do realize that that is not smart.

I'll keep you posted on my decision.

Michelle

[TLC_31]

My ecocardiogram and treadmill test today were very positive. The cardiologist, not realizing I had already decided to stop Gilenya, appeared comforted when he learned of my decision.

Dreading the needle, it’s so tempting to restart, maybe the effects would have diminished after one more month? We'll never know, and I’ve felt so good in the last week, I have to slap myself to remember just how rotten the drug treated me. And the pulse rate of 24 at one point while sleeping, along with one BP measurement of 94/36, outright scared my girlfriend (who took those and many other measurements). Have to keep her happy! :-)

I want to emphasize again that many Gilenya users have not reported intolerable side effects. Now that it appears that there are no long-term adverse effects for me, I’m thankful that at least I gave it a try.

My switch to Gilenya was part of a Phase IV clinical trial (see http://clinicaltrials.gov/ct2/show/NCT01216072?term=fingolimod&rank=8), so the drug company certainly will find out about the side effects, perhaps the FDA does as well.

[Willowwoman777]

my neuro and I decided not to chance it because of the respiratory effects as I have asthma/copd and gilenya can diminish lung function :) So, do you have asthma? That could be why your other neuro said it wasn't for you..he must have had his reasons.

[Sarahsmom46]

Wow, these side effects were drastic and only being on it less than 3 weeks is amazing.  Did you or your doctor report these dramatic side effects to the drug company or the FDA?

[TLC_31]

I despise needles, so even though Avonex was working for me for more than seven years, I switched to Gilenya. It seemed so refreshing to simply take those tiny little capsules. But after 19 days (Oct. 31-Nov. 18), I’d had enough.

I write not to alarm or scare anyone … my experience is unique, and Gilenya certainly works superbly for others. Posts to the Gilenya (Fingolimod) Users Support Group on Facebook, an outstanding resource at which I am still a member, are a testament to that. But we have to remember that there is no free ride. If a drug keeps MS at bay, we might be best to stick with it and find ways to mitigate the side effects. In the case of Avonex, those flu-like effects seem to decrease over time anyway, and a regiment of hydration and Tylenol (or Advil, Aleve, etc.) can help. And Sunday night may not be the best time to inject for those with Monday jobs.

In my case, Gilenya left me extremely fatigued. In the evenings, I was told it looked like my soul had left my body. It affected my heart rate (already very low normally) and my blood pressure much more drastically than I’d expected. Still I some apparent lingering effects; I have an ecocardiogram and treadmill test tomorrow to see if it might have done permanent damage. I would have had the test two weeks ago, but I came down with pneumonia more suddenly and harshly than ever before … I attribute that in part to Gilenya. So I’ll restart Avonex in two weeks.

Ask questions anytime!

[Sarahsmom46]

Try the Gilenya Support Group on Facebook.  You can join or just read the posts and responses. I found them very helpful when I first started on Gilenya.

Julie

[Needtoknow613]

I have been taking Avonex for the past 15 months, but I continue to have the flu like symptoms on my recovery day.  Because I take the shot on Sunday nights, I loose a day of productivity every week. I'm tired of feeling like crap so my neuro is going to try Gilenya.

[meg321]

I would like to hear more about gilenya especially from others who are taking it.

meg

[Jifr]

Have you been on any other DMDs?

[Sarahsmom46]

Not much in the way of side effects except that a lot of hair loss for the first 3-4 months. It went away after that and haven't had anything else that I could really call a side effect.  I am nearing my one year anniversary and that means I'll have to start paying my copay for it.  If you don't already, Novartis has a program where you don't even have to pay the copay for the first year.  I have put that saved money to good use for sure.

Check out the group on FB. They are pretty friendly, jjust like here.  

Julie

[Needtoknow613]

What side effects have you experienced.

Michelle

[Needtoknow613]

Thank you.  I will check out the support group on Facebook.

[Sparkysarah]

I am not on Gilenya, but on an oral drug trial in Uk and the drug is apparently very similar in structure. I have had few side effects and am very positive about it. However it is a personal decision and the best thing to do is to be as informed as possible.

Good luck

Best wishes

Sarah

[Sarahsmom46]

I have been on Gilenya since last February. If you have questions, I'll be happy to share my experiences.  There is also a Gilenya support group on Facebook if you want to check it out.  They welcome people who are not yet on the drug as well as you can get a sense of others' extperiences by just reading the posts.

All you have to do is put Gilenya Users Support Group in the facebook search and it will come right up.

Good-luck with your decision.

Julie