Gilenya and blurry vision

[adam7722]

Hi all,
I have been on Gilenya for 4 months. After 2 months, my vision in the left eye started to get worse. The worsening is a gradual/slow process. (My left eye was affected 6 months ago by optic neuritis, but recovered almost 100% after in a month) Tests do not show macular edema. MRI does not show inflammation.

I am now thinking of stopping Gilenya and switching to Tecfidera. Wondering if anyone else has had similar problems... would switching help? I'll appreciate any input Thank you!

[msgijo]

I took Gilenya for 5 years. Yes blurred vision. Then horrible light sensitivity and killer headaches. After I stopped Gilenya all of this went away.
Oh - BTW I had visited opthamologist, Neuro and PCP looking for reasons for any of these problems but none of them could find anything wrong.

I found out after I stopped Gilenya that it has a nasty habit of contributing to a relapse if you just put it down (revenge?) so if I had to do it again I would consider tapering off of it. I don't know if that would help but it certainly couldn't hurt to do so while you are getting approvals needed for a new DMD.

Best of luck to you .

[adam7722]

I took Gilenya for 5 years. Yes blurred vision. Then horrible light sensitivity and killer headaches. After I stopped Gilenya all of this went away.
Oh - BTW I had visited opthamologist, Neuro and PCP looking for reasons for any of these problems but none of them could find anything wrong.

I found out after I stopped Gilenya that it has a nasty habit of contributing to a relapse if you just put it down (revenge?) so if I had to do it again I would consider tapering off of it. I don't know if that would help but it certainly couldn't hurt to do so while you are getting approvals needed for a new DMD.

Best of luck to you .

Thanks a lot for your response. This is one of the most helpful pieces of information I have gotten. May I ask whether the blurry vision was in one or both eyes? (I only sense it in one eye, the one which was affected by optic neuritis.)

Thank you!

[msgijo]

I had ON in both eyes (was the lead in to my MS dx) and my vision is still kinda screwy. I didn't notice that vision in one eye was worse than the other, but the light sensitivity was definitely worse on right side.

One of my neuros (at that time) tried to tell me that the headaches were migraines and gave me some med for it. I asked her if that would kill the headaches or just make them bearable and she said that it would take the headaches away completely. But it never did, and I never believed it was migraines anyhow. I felt validated in my belief when she could not point to any "migraine lesions" on my MRIs.

You asked about vision, but I must also tell you that I never "felt good" on Gilenya. I stayed tired, complete lack of energy, and just felt rundown all of the time.
I tried hard to stay on Gilenya because it was an oral DMD and I could tell myself that it was not that bad (was on Avonex prior), but I honestly didn't realize how bad I felt on it until I stopped taking it.

I AM NOT trying to talk to talk you out of taking Gilenya. Everyone reacts differently on each of the DMD's. I am simply telling you what my experience on it was.
BTW I am on a drug vacation now. My neuro is not happy about it but he respects my decision. The only one I am interested in would be Ty but he is reluctant to have me on that. I am stable with limited (visible) progression after 22+ years of MS, so he feels that I do not need such a 'heavy hitter'.

Best of luck to you with this .

[adam7722]

I had ON in both eyes (was the lead in to my MS dx) and my vision is still kinda screwy. I didn't notice that vision in one eye was worse than the other, but the light sensitivity was definitely worse on right side.

One of my neuros (at that time) tried to tell me that the headaches were migraines and gave me some med for it. I asked her if that would kill the headaches or just make them bearable and she said that it would take the headaches away completely. But it never did, and I never believed it was migraines anyhow. I felt validated in my belief when she could not point to any "migraine lesions" on my MRIs.

You asked about vision, but I must also tell you that I never "felt good" on Gilenya. I stayed tired, complete lack of energy, and just felt rundown all of the time.
I tried hard to stay on Gilenya because it was an oral DMD and I could tell myself that it was not that bad (was on Avonex prior), but I honestly didn't realize how bad I felt on it until I stopped taking it.

I AM NOT trying to talk to talk you out of taking Gilenya. Everyone reacts differently on each of the DMD's. I am simply telling you what my experience on it was.
BTW I am on a drug vacation now. My neuro is not happy about it but he respects my decision. The only one I am interested in would be Ty but he is reluctant to have me on that. I am stable with limited (visible) progression after 22+ years of MS, so he feels that I do not need such a 'heavy hitter'.

Best of luck to you with this .

I cannot thank you enough for sharing this with me. (and yes, I do understand -- your story is about your experience and does apply on me necessarily)

One last question, if I may: When you decided to go off Gilenya, did they think about putting you on Steroids for the first few weeks? (as a protective measure against relapses) I suggested this to my neuro but she said we don't suggest this...

[msgijo]

I cannot thank you enough for sharing this with me. (and yes, I do understand -- your story is about your experience and does apply on me necessarily)

One last question, if I may: When you decided to go off Gilenya, did they think about putting you on Steroids for the first few weeks? (as a protective measure against relapses) I suggested this to my neuro but she said we don't suggest this...

Nobody but me believed it was because of Gilenya. I had talked to both neuros about other DMD's but they were set on me staying on Gilenya. I had been to so many doctors to try and find a reason for ANY of the sx I was having and came up negative for EVERYTHING. So the answer is no - I simply quit taking it.

Shortly afterwards my husband had a brain hemorrhage (stroke ) and was in ICU for 2 weeks. That was followed by a year of various procedures to stabilize his brain ending with a 12 hour brain surgery. It seemed like each procedure caused even more disability for him (I have had to take on all of his stuff and all of the household, home repairs and yard stuff as well as all driving) and so I have not had the time or stamina to pursue any medical things for me until a couple of months ago.

I am fighting an overactive thyroid now and so that is probably the biggest reason that my neuro is giving me a pass on DMD's. I consider myself VERY fortunate that I have not had a relapse during the past 2 years with all of the stress that I have had going on as well as not being on any DMD. BTW I have never been offered steroids.

Have you and your neuro decided on a DMD to start on after Gilenya? If not then I would suggest that you look at a sticky on the medicine forum which lists all the approved therapies and some information about each of them. Can you go ahead and get everything set up to start on a different DMD ASAP after stopping Gilenya? I THINK that the half life is only 10 days (Of course it will take much longer to get it completely out of your system). How are your Lymph counts? Will you need time to build them back up before starting on anything else?
And I guess the biggest question is if the sx that are bothering you are really bad enough to stop Gilenya and start on something else (different potential side effects)?

Understand that my sx started about 7-8 months before I decided to stop taking Gilenya. I had done more than enough trying to find any other reason for them besides Gilenya and they were continually getting worse.

A lot to consider. Good luck wading through this to make a decision.