Gilenya Side Effects-caught between a rock and a hard place

[Redwings]

I am with CrazyCatLady on this one the dr may have jumped too soon to take you off of this.
A swollen blood vessel sounds kinda like something that is not the drug to me

Macular edema is not a "swollen blood vessel." Macular edema is swelling of the retina inside the eye, where central vision originates. The incidence of macular edema of 0.4% was in people taking fingolimod, a figure cited as being twice as high as in the general population. That two-fold increase is not just "slightly higher" than in the general population. It's significant and is why two eye exams are required by the Gilenya prescribing guidelines.

Even with an incidence as low as 0.4%, someone is going to develop it, and it isn't always going to be someone else.

In treating macular edema, the first step taken by prudent practitioners is to treat the underlying cause, if one can be identified and if it can be reasonably accomplished. In cases of macular edema believed to be due to Gilenya, the first step, then, is to discontinue Gilenya. There are many medical professionals who will argue that, when trying to save someone's vision, stopping Gilenya immediately is not "too soon." Macular edema can resolve if addressed quickly. If not, it can leave permanent damage.

Many people with MS are aware of the permanent damage to vision that optic neuritis can cause. It's fairly well-known that the outcome can be bad. The effects of long-term, untreated macular edema can be just as bad for central vision as some cases of ON. For comparison, it might be helpful to imagine that Gilenya can cause a visual outcome that is as bad for central vision as optic neuritis. How soon would be "too soon" to stop the medication and try to get the eye to heal and return vision to normal ASAP? How soon is "too soon" if, the longer the person is on Gilenya and the longer vision is reduced, the greater the chances are that vision will not return to normal?

[Just a small town girl]

Thanks for the info Redwings. Cindarelly was referencing another post where Jimmi stated that his doctor diagnosed him with a swollen blood vessel. In that post, Jimmi said that the doctor never used the words macular edema. I think she's hitting at the point that this doesn't actually sound like macular edema.

Regardless, I'm very sorry that this happened. I'm glad that Jimmi is standing up for what he wants and switching to a different medicine.

[Redwings]

I was responding to the later post under this thread where Jimmi said:

Now however, I have macular edema which is really scary and have stopped taking the Gilenya.

...and not the earlier post under another thread that says the doctor didn't use those words.

The description (in the other thread) of the problem being "a swollen capillary" without a mention of retinal edema is odd and suspicious, because the characteristic of "swollen capillaries" is that they lose their tight cell junctions and leak fluid. In this case, that fluid is most likely to leak into the retina, which is exactly what retinal edema is. Anyone who understands the anatomy and physiology of the retina recognizes that, yes, this vague description actually does sound like macular edema. In a person taking Gilenya within the time frame that macular edema is known to be most likely to occur, macular edema is the prime suspect for blurry vision. It would take the clinical data (which we don't have) to prove that it isn't.

The implications made in the posts that follow Jimmi's -- which include incorrect information -- are that the "swollen blood vessel" doesn't sound like macular edema, macular edema is not a big deal and that Jimmi's doctor discontinued Gilenya "too soon" for such a minor problem. Those assumptions significantly understate the potential seriousness of macular edema. They could be misleading for anyone following this thread and finds themselves in the same situation who might, then, also underestimate the potential for vision loss and fail to act early enough for a prompt and favorable recovery. To allow those statements to go uncountered would be a disservice to those readers.

[Just a small town girl]

Thanks again Redwings. I always appreciate your posts. It's nice to get that kind of medical information.

[laurali]

As we speak

I started on Gilenya last Thursday. My heart rate started at 74 (and I was very anxious when that was taken. I have a lower heart rate because I'm a swimmer) and dropped to 56 within the first hour. From that point forward, for the most part, it stayed in the low 50's. They kept me 7 hours and sent me home at a 51 because most of the time is was between 50 and 53. I felt very fatigued that entire time. My pulse has reached a high of 64 since being home and is usually in the low 50's.
The past couple of days I have been very fatigued with this and short of breath and abnormal feeling heartbeat.


There are "discussions" with docs going on as we speak. Last I heard, they are sending me back to cardiologist.

[evw123]

Hi guys, it seems like some of you are doing really well on the Gilenya I was wondering if any of you know of a neuro in the Long Beach, CA area? I just moved here and the Copaxone really isn't working for me anymore and would really like to start on Gilenya ASAP. Any suggestions would be greatly appreciated!!
Thanks!

[fallenapart]

Ok now I am scard

My doc wants me to start Gilengya or whtevr it cald he teld me it wil help with the MS that I say I donr hav but my dauthr say I ned to lisen to the doc she be my advocat I alrede got bad bak pain and hedaks so if I tak this med wil it mak it be wors? I got a really loving lil dog that I walk alot he maks me happe and if I cant walk him we both wil be vere sad. What shod I do???

[Jimmi]

Macular Edema / eye problems

I have been on Gilenya for the last 40'days and experience the extreme fatigue and headaches, a few days of severe back pain and flunlike symptoms but most of those did level out'with a few days of fatigue. Now however, I have macular edema which is really scary and have stopped taking the Gilenya. I will be happily returning to the bruises hand swelling from the COPAXONE.

I appreciate all the input from everyone. In regard to my original post I will be returning to the Retina specialist in a week and a half and surely will clarify with him my diagnosis. All I know is that, as of now, my eyesight has not yet returned. I also now have increased numbness on my RHS of body ( I have had this sensation since my first exacerbation but it it tends to come and go, now it is always there and is more prevalent). My doctor has asked that I wait a full month before restarting Copaxone, which is only a couple of weeks away, however I am nervous about my symptoms getting worse. Has anybody else stopped Gilenya and what has their doctor's recommendation for restarting other medication, especially Copaxone.

[Cindarelly]

I hope and pray your vision is restored. I know we all hate to see anyone of us fall to any one of the dreaded big side effects..
As to starting another dmd.. I would be no help either. I just jumped on here to wish you the best.. I know it is always tough when we are not able to take one of these. I had to quit the interferons.. I thought I had lost my battle at the time..
Then moved right on to C.. I have went on the fight a lot since then...

[Jimmi]

Formal CME Diagnosis from Retina Specialist:

Phakic Cystoid Macular Edema (CME) in both eyes (stronger symptoms in right eye) reported side effect of Gilenya. Advice is to terminate Gilenya treatment.

[Just a small town girl]

I'm so sorry Jimmi. I really hope that the eyesight returns. Keep us posted and know that all of us are thinking of you and sending good thoughts your way.

[Cindarelly]

I too am terribly sorry Jimmi.. I will send prayers your way for a full recovery.. I am so sorry this has happened to you.
It just hurts us all as a ms family when one of us falls to the bad stuff.
I know it did not happen to me... but it still happened to one of US... so it pinches pretty darn hard for sure ... best wishes to you....

[PammieJ]

Gilenya side effects...

Reading through this series of comments it seems that most of you are not exactly thrilled with Gilenya. Then one post from 04/14 implied that everyone was doing well! My doctor is suggesting that I try Gilenya. I was on Betaseron for over 14 years stopping in July '08 as my injection sites became unusable. Then I tried Tysabri for 6 months which I found to be worthless for me. Awful side effects were the only result I found. I had no plus sides to that treatment. I quit that in Jan '09. Then in Jan '10 I did steroidal IVs for about a year but since Jan '11 I've not been on any program.
(Sorry, I know this is a bit wordy.) I want to read the good & the bad of Gilenya but the majority of the posts are leading me to believe that this may not be the way to go. I haven't had an exacerbation in years (diagnosed in '74 - first "real" attack was May 12th (Happy Anniversary!!) in 1989). I've been pretty stable since about 2003-ish. I'm considering just pressing on without going into a program but at the same time, I'd like to at least maintain this level of MS disability. Does this a make any sense? Thanks, Pam K in Arkansas.

[Just a small town girl]

It makes complete sense. I'm newly diagnosed with only two attacks and one pseudo flare today. On a day to day basis no side effects. I had some elevated liver enzymes and too low lymphocyte counts. Both resolved on their own and I never would have known if not for the blood tests.

I love this drug. I get to not really think about the MS while having the security of a really high efficacy rate. It'll be 6 months in a few days and I'm getting my follow up MRI soon.

Keep us posted on what you decide to do

[new kid on the blok]

new to the gilenya

Yesterday was my first dose of Gilenya. Horrible night!! I feel slightly better than road kill this morning and that's very unusual for me!! I have spasm and fatigue as my two worst residual symptoms w/o treatment. I have had "significant change in the MRI" last two so we had dropped Copaxone and gone to Tysabri. Tolerated well for 14 months and then what appeared to be an allergic reaction....hmmm!! So now, after all other treatments have either 1) not been tolerated or 2) not been beneficial I am on the "newest". Started treatment yesterday. Heart rate dropped after 4 hours to 44 ish and the doc was concerned. Vision still somewhat "blurred" this morning. Time for second dose and still too new to judge but my fatigue is a +10 at this point from before.
It's too early to tell but 20+ years since Dx I have no complaints. I know that I need to stay on something as I continue to be more symptomatic w/o any treatment.