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Gilenya: Why Follow-up Exams are Crucial

Updated on March 6, 2019
Jen's Solitude profile image

I've been living with MS for 25+ years and have tried almost every medication available. I have also been evaluated and tested extensively.

Ocular Edema

I started Gilenya and originally my first follow-up appointment was to be three months after I began the DMD (disease modifying drug) but because of a delay caused by my doctor's failure to supply their reports to my neurologist in a timely fashion, I was delayed.

I did continue to keep up with others taking the Gilenya pill and was very mindful of the fact that macular edema could be lurking in the background but once

Initially I experienced vision problems but for a time the eye problems lessened so I felt confident I had time to get the condition checked out.

My current neurologist assured me that macular edema and ocular edema are the same. In fact he told me there is no such thing as macular edema. Ocular edema is the correct term.

Neurologist's Consultation

My neurologist made sure I understood all the latest information about Gilenya including disclosing the deaths that occurred. ( I had read about the deaths and precautions put into place so I was quite comfortable with staying on the drug.)

He expressed his desire that I follow up on all other procedures and appointments in order to determine how my liver and immune system were holding up to the oral medication.

Gilenya and Physical Side Effects

Blood Pressure

My first shocker involved my blood pressure. Looking back I know I had no right to be surprised. My blood pressure had been at good levels for so long I hoped it was a "sign" that it could hold its own without the three different prescriptions my general practitioner had prescribed over the course of the past fifteen years. Boy was I wrong! Although I didn't need to be rushed to the emergency room, my blood pressure was high enough to get my attention.

Sleep Apnea

I told my doctor how much better I was feeling since beginning Gilenya. I explained that I no longer need to take Prozac for energy and that my leg pain has decreased so much that I did not need Lyrica any longer. He felt that my improvements were good news but wondered about the source of my leg pain. As we talked he began wondering about the source of my fatigue as well. I was reminded that fatigue can come from other sources besides MS. I told him I never had sleep issues before developing MS and he expressed interest in having me take a sleep apnea test.

I was forewarned that if the technicians woke me during the night it meant I failed and would indeed have sleep apnea in which case we would take necessary steps from there.

The test proved I did not have sleep apnea. Although I had a very hard time falling asleep and staying asleep once I dozed off, I was assured that I was asleep long enough to rule out sleep apnea.

MS is therefore the main culprit behind my sleeping difficulties and adds to the constant state of fatigue I face each day.

Changed Leg Reflexes

In times past, my right knee barely moves when tapped with a reflex hammer. The normal MS reaction is that a knee tap causes the leg to fling upward in an exaggerated way, which is exactly what happened during the exam. I specifically asked if my reaction was due to taking Gilenya. He said he couldn't be sure it could also be that I had an injury that had nothing to do with MS which healed on its own.

Concluding Analysis

Although I hoped my eye problems were unrelated to taking Gilenya, it turns out Gilenya was the culprit. My vision problems caused me to stop driving a great deal of the time. This is a problem that cannot be fixed with a stronger eye-glass prescription.

Ocular edema gave me blurred vision and effected by depth perception. My eye exam yielded very strange findings that caused the ophthalmologist to call my neurologist for a consultation. I was informed that the only way to account for my distorted vision was to attribute it to taking the Gilenya. I was told to immediately discontinue its usage.

I enjoyed the added energy afforded to me, but it was far outweighed by the vision loss.


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    • Jen's Solitude profile imageAUTHOR

      Jen's Solitude 

      9 years ago from Delaware

      Hi Paradise7, Connie and sarafr198,

      I hope everyone's weekend was okay. I enjoyed being able to get out of the house and actually meet with my congregation in the flesh. I am tired now, but it is a good kind of tired. :)

      Paradise it would take a lot to make me stop taking Gilenya now. Like you said this is the one treatment that is working after the six month time period. I sure don't want to give it up!

      Connnie, you are so right. I haven't felt this good in 5 years. I am hoping that the longer I take it, the more improvement I will notice. What a joy it would be if I can just get back to the way I felt 10 years ago. I wouldn't know what to do with myself! LOL When Doctor P asked me why I wake up every hour on the hour when I don't take Xanax, I told him I wondered the same thing. It is impossible to fall into a deep sleep with that happening and I would love for someone to tell me why that started only after the MS settled in. Maybe he will be able to offer an alternative.

      sara, thanks so much for the links. I have noticed a marked improvement in my health since I have incorporated the many suggestions made to me over the last few years. My husband says he has successfully converted me over to a more healthy lifestyle. He is shocked now when I suggest food that I wouldn't have considered eating before my transformation. LOL It has helped though and who knows, maybe in combination I am reaping more rewards than I ever thought possible.

    • profile image


      9 years ago

      Hi Jen,

      I'm glad to see that you're noticing improvements using this new medication.

      I was wondering, have you ever tried the Swank or paleo diet (reversed a woman's symptoms...she had a TEDx lecture on it:

      There's also Clean Cuisine that is was formulated by a nutritionist who had MS and her doctor husband ('s talked on a few programs including the Montel Williams show and says she's been pretty much symptom free for 10 years.

      I'm G6PD deficient and I found that there are quite a few foods that people with G6PD deficient people are supposed to stay away from to avoid hemolysis or low cholesterol which could both probably contribute to neurological diseases.

      I've been taking two teaspoons of black seed oil (Nigella Sativa) every day. It has over identified 100 therapeutic compounds, many health benefits, is safe and natural (black seed is often used in African and Southeast Asian cooking). There are accounts that it has reversed MS and other autoimmune diseases.

      Sorry this is such a huge post...there's just so much going through my mind based on all the different things I've read so far as a newly diagnosed person.

    • Connie Smith profile image

      Connie Smith 

      9 years ago from Tampa Bay, Florida

      I know it is not a cure, but like Lexi, when you have a major disease, even minor improvements are something to celebrate. It sounds like you are having some real progress here. That is exciting and very encouraging. It would be great if they find out that the current source of any fatique is sleep apnea and there is something to be done. I hate that you are on Xanax all the time. I have a prescription, but I use mine very sparingly. That is not a medicine to take lightly, it is too addictive. Hoping that they can do something so that you won't need it. Keep up the good work here, lady, on all fronts! ps Happy Anniversary! My three year is coming up in two weeks.

    • Paradise7 profile image


      9 years ago from Upstate New York

      A treatment. A real treatment that seems to be working! Praise be. I know there are a lot of risks, a lot of side effects, but still...hallelujah!


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