Gilenya: Help With MS Fatigue

I began relating my Gilenya experience in August 2011, and 2012. I have roughly five months of information to share.

As forewarned by Novartis, I experienced "eye-sight problems" especially during the third, fourth and fifth month on Gilenya. I can best describe my eye-sight changes as quite attention grabbing. Slowly I noticed an increased blurriness when reading printed material on information off of my computer screen. I also saw dark circles in the middle of my field of vision that I knew were not really there. Although I immediately suspected it was the fingolimod, I couldn't say for a certainty because I always suffer minor eye problems as a regular part of my life living with MS. Yet another problem arose while driving in a car. There was quite a difference in the road signs and being able to read them clearly. I came to the conclusion that I had to voluntarily limit my driving to the open highway. Reading highway signs was much easier than reading street signs. So the few times I drive these days I limit myself to well-known near-by areas or the highways that have bigger print on the road signs.

This is just typical MS vision symptoms, or macular edema caused by the fingolimod, or perhaps a case of ON (optic neuritis).

Not so glamorous is the next symptom I have experienced. Although not currently a problem diarrhea did occur infrequently the first three months of my Gilenya use.

The best news I have to report since beginning Gilenya is in my energy level. My fatigue has actually lessened and I am so happy to feel myself getting stronger and stronger. So improved is my fatigue that I have even reduced the Prozac I was taking to get myself going. I look forward to discontinuing the Prozac altogether as my energy levels out and holds its current course.

Infections

Infections are a potential result of fingolimod and no one with MS wants to make him or herself open to getting the flu or increasing the seriousness of an infection. So far I have not had this problem. I fear the one area I may be most prone is my sinuses. I have noticed increased sinus problems and accompanying headaches, but so far no sinus infection.

Liver enzymes are of great importance and I will need a complete blood work-up to see how my other physical problems are being helped or hurt by adding Gilenya to the mix.

Weighing the side effects with increased energy levels are a never ending consideration. It is natural to want to function at as high a level as possible. Yet other health concerns should not be ignored.

Eye sight cannot be tossed aside in favor of increased energy. Other problems such as liver enzymes are also crucial to good health. Gilenya usage means constant monitoring has to take place. Sound judgment must be used.

Sadly, it was necessary to discontinue the drug. I was thrilled with the increased energy I received, but saddened with the severe reaction to my vision. Immediately after stoppage, my eye sight cleared up. Why ocular edema or swelling occurred in my case is unknown. It is a known complication that is well outlined by the drug manufacturers.

Some drugs work out and some drugs fail. No one knows what will happen until they personally try a drug for themselves. If a drug trial is unsuccessful, people with MS can patiently wait for the next drug coming down the pipeline.