Last reply 9 months ago
What scares me about gilenya

Good afternoon all

In latest couple of years I had cornea and lense implant
And im planning to do it in that again to the other eye
I heard from the neuro i met yesterday that gilenya might effect the eyes

Do u think its common specialy for people with eyes problems like me..

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9 months ago

Hi chick @nutahell
Well I guess that’s a question you need to ask your eye surgeon !
The warnings/precautions do say:-

“Macular edema, a vision problem that can cause some of the same vision symptoms as an MS attack (optic neuritis), or no symptoms. If it happens, macular edema usually starts in the first 3 to 4 months after starting GILENYA. Your doctor should test your vision before you start GILENYA; 3 to 4 months after you start GILENYA; and any time you notice vision changes. Vision problems may continue after macular edema has gone away. Your risk of macular edema is higher if you have diabetes or have had an inflammation of your eye (uveitis). Call your doctor right away if you have blurriness, shadows, or a blind spot in the center of your vision; sensitivity to light; or unusually colored vision.”

Good luck princess x

9 months ago


Been on Gilenya for more than 2 years now and have not encountered the mascular edema. Nonetheless, as suggested before, it is better to have your eyes checked after 3-4 months.

It has been quite effective for me wrt. to preventing relapses and lesions, preserving volume and slowing brain atrophy. You will also have to do a routine blood work to check on the liver enzymes and lymphocyte count. While the liver enzymes were up after 3 months, they normalized after 6 months. I personally do not see any side effects yet.

9 months ago

Yeah I’ll ask my eye surgant before I start it, I better do.
My neuro said it doesn’t have any similar sides effects to interferron flu-like and such.
Is that true.
And he assured me I’ll get used to it simply.
He said there’s no chance we leave you with no treatment any longer.
Now you are fine but we are afraid that you get a relapse we cant do anything to fix it I felt a bit hmm dont like to say it but afraid.

Thats why I finwlly accepted
This hospital is one of the best in Saudi Arabia
Same city as Aramco company.

They told me they will keep checking on my eye liver heart kidny 😔 still worried

9 months ago

Ah chick, it’s sounds very exasperating and confusing
for you at the moment.
But It sound like an excellent hospital and you are in good hands, without the delays of the uk. . How much will they charge you for the dmd?

And yes, speak to eye surgeon; maybe take the box with you to show him; but don’t take any until you have spoken to him and neurologist.

I think your eyesight is more important ?

As for the DMD, did you discuss quality of life with your neurologist?

Or told him about your pre existing eye issues? I think it’s a conversation worth having

You’re a clever girl and the internet does have lots of information for you to research.

Don’t just rely on the opinions of other people

Knowledge is power and will help you to make peace with whatever decision you make.

Knowledge is power ( I know I repeat) so do your research and draw up a list of pros and cons?

Then you will be making a decision from a place of control?

Yes it’s difficult at the moment, but things will improve Chick

And go and distract yourself with some fab Saudi food!! Try not to fret princess, get the tunes on and dance it out

Sending healing sparkles to y’all ✨☘️☮️💕💎🌈✨

9 months ago

Did you have to change some habits food tea coffee
Im young sometimes wild more than i should
And i fear my bad temper effects too 😔
My temper is wild weather when im laughing or when im angry :/

Should i worry about anything like that

9 months ago

And if you want to kickstart your immune system and get a bit of relief, then I would recommend LDN for sure. You know after 3 days whether a total dose of 4,5mg has worked
So none of this, ambiguity or waiting around
I’m much worse than you flower and it gave me the courage to keep Livin well, not just existing

9 months ago

All meds surgeries transplants are free in Ssudi.
This hospital is epic problem with it its far
18 kms or 11.2 miles or 9.7 nautical miles
So its 2 hrs sometimes less or more by car

And yep I keep searching for infos from trysted source and official sites.

About dancing to my tunes its as if u know they on now :p listening to my phone while in bed
About to sleep or at least try
Its 00:54 here 😉

Be safe you have a great spirit i like that

9 months ago

I’ve asked my hospital already about LDN sadly not available… yet :/ 😉

9 months ago


I didn’t have to make any lifestyle changes after I started gilenya. I dont drink coffee; only tea and has been the same way, nothing different. As long as you don’t overdo anything and keep in moderation, you should be fine. Of course temper issues don’t help anybody with or without MS!

There’re tens of thousands on Gilenya and doing ok so rest your concerns and begin your dmt journey!

9 months ago

You’re right everything goes best when its moderated
Honestly i over condume coffee
Two cups before work 1 at work 1 when i return
And same goes with tea
Thanks for ur reply again i gotta make a change and have more control at my habits to keep it save


9 months ago

The eye issue is a known, very rare, side effect of gilenya. That’s why (certainly in the UK) your eyes are routinely tested not long after starting treatment. If the drug had caused a problem, you would straight away be offered an alternative DMD. Once you’re on treatment you’ll be routinely monitored, with bloods taken every few months. Any potential problem would be spotted early and again – you’d be moved to another drug. Gilenya is simple to take – a daily capsule. I’ve had no side effects at all and the two annual MRIs have shown no new lesions so it’s working. Once you’re ‘launched’, you can hopefully reduce your anxiety about the MS and let your medical team handle it all… xx

9 months ago

@cameron I hope it. Works right for blood eye and MS
Now i feel i regret not having already

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