Anyone on Gilenya with delayed side effects ?

[cosake]

Hi there -

Today is Day # 2 on Gilenya and I am so far feeling no side effects - no heart palpitations, headaches, nausea, fatigue, etc.

I'm wondering, for those who experience/d side effects such as headaches, nausea, fatigue, etc., did you have them from the first day you started Gilenya, or was there a delay before some of these side effects started happening ?

I want to be hopeful that this is going to work out well for me but I wonder if the side effects might be around the corner.

Thank you !

[susanmastrocola]

smm1969

I started Gilenya 3 weeks ago. Some strange dizziness, & a few old symptoms have popped up, but nothing major. Nothing that would cause me to quit & go back to Copaxone that I'd been on for years.
I'm waiting for the other shoe to drop , as well. Saw my neuro. yesterday who told me that he's getting positive feedback from other patients. He also mentioned that I could take G. every other day if I get bothersome side effects, like liver issues.
Cautiously optimistic for now...
Good luck!

[cosake]

Glad it's working for you so far ! For now I'll go with the flow and pay careful attention to my body.

[Moosette]

I started getting some headaches about a week into taking Gilenya so now I take it before bed and that has totally gotten rid of any issues...I'm almost a year into it now and am doing great, hope your experience with it goes just as well, good luck!

[cosake]

Thank you Moosette ! I've already talked to the doctor about moving to take it at night if I need to. But for now I'm doing pretty good.

Had a brief period of major fatigue at the grocery store today, and a little headache. I think the fatigue is probably a Gilenya side effect but won't know for sure until I test the theory a little more. The headache - who knows at this point ? But I will be making notes about it in a log to be able to track possible side effects.

[CGMoonbeam]

Sleep

I don't know for sure if Gilenya is the cause, but my sleep patterns are all screwed up. I've been on it for about a month, and I can't sleep when I want to, but then pass out for a couple of hours at a time during the day. Another issue is that the insurance that I was switched to won't approve Provigil or Ampyra--two drugs that I felt helped the most :-(. Just wondered if sleep was an issue at all.

[cosake]

@CGMoonbeam -

I hadn't had any sleep issues until the last few nights, after being on Gilenya for 5 days. Slept OK last night, though, so could have been something else.

I'm going to keep an eye on it to see what happens.

You may want to talk to your doctor about a switch to taking it at a different time of day.

[CGMoonbeam]

I take the pill in the morning, so I wouldn't think that would be a problem at night. I do plan to talk to my neuro about sleep. I'm trying to appeal the Provigil/Ampyra problem and am trying some all natural sleeping aids. Slept a little better last night.

[jmcinroy]

later side effect of Gilenya

I've been on it about 6 months. I was fine, but now (for the past four days) I have been so dizzy/light headed/off balance and nauseous. Also a cough and a bit of a sore throat. I'm calling doc tomorrow. I kept hoping it would go away. As far as sleep issues, I take it at night, and have trouble sleeping. I don't think I saw that as a side effect though?

[cosake]

jmcinroy - You should talk to your MS doctor about switching your dosage to the morning to see if it makes any difference to you.

I now take Gilenya every night and I don't have any more sleeping problems than usual. I also feel like I'm having less fatigue during the daytime than when I started Gilenya.

You should see your doctor. If you have a cough/cold, you could have some stuff going on with your ears which might cause problems with your balance, etc.

I have noticed that I get slightly dizzy more often than I did before my MS diagnosis. Or maybe I just pay attention to it more now, I don't know. But for me it did not seem to get any worse when I started on Gilenya.

Good luck and keep us posted.

[Temagami]

Been on it since late June and no side effects and recently had a clear eye examen with respect to the macular edema possibility. Once in a while, I can hear the blood flow through my ears and this is new, but nothing else. I´m getting an MRI soon and will know if other than not causing side effects if it is working. Am looking forward to BG12 as an option.

[cosake]

@ Temagami -

I'm curious if the Gilenya is working and not giving side effects, why would you still be looking forward to the BG12 ?

[Temagami]

sorry about the delayed response- I would switch to BG12 b/c it is kinder on the liver and avoids the macular edema risk.
I spoke too soon on the side effects- I feel fine, I just have a very low WBC and lymphocyte count and have gone on an every other day dosage with hopes that it makes a major difference ´cause I don´t have other options. I have another WBC panel at the end of the month.

[cosake]

@ Temagami - have you considered Aubagio as an option ?

My new MS neurologist (who I really liked - thank goodness) took me off Gilenya yesterday. I have an AI blood disorder, ITP, and he feels that Gilenya is not something I should be on with the disorder.

So, after the holidays I will be starting Avonex. If that does not work out, we will look at Aubagio.

Good luck - I hope the reduced dosage helps out.

[laurasari]

Cosake.
Is there a reason your dr didn't recommend the aubagio. My dr is thinking of taking me off Gilenya to start Aubagio which he said is out because of cardiac effects. Of Gilenya and me because of issues I experience without my beta blocker he said he will read up on it and decide in feb at my next visit. Good luck