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Gilenya: Help With MS Fatigue

Updated on March 7, 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.

Details of My Gilenya Failure

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


Symptoms to Report

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).


Diarrhea

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.

Improvement in Enery Level-Decrease in Prozac 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.

Ongoing Examinations are Necessary

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.



Discontinued Usage

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.

Comments

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    • Jen's Solitude profile imageAUTHOR

      Jen's Solitude 

      7 years ago from Delaware

      Thanks prasadjain

    • Jen's Solitude profile imageAUTHOR

      Jen's Solitude 

      7 years ago from Delaware

      iamaudraleigh, it is a lot of hassle, but if she has not had any success with the other disease modifying drugs or like me she cannot stand the injections, I think it is worth looking into.

    • profile image

      iamaudraleigh 

      7 years ago

      Jen's solitude, I am going to share this with my family! My Mom has MS too! This could indeed be a benefit to her! Voted up and shared!!!

    • prasadjain profile image

      Dr.S.P.PADMA PRASAD 

      7 years ago from Tumkur

      Useful information for the suffers

    • Jen's Solitude profile imageAUTHOR

      Jen's Solitude 

      7 years ago from Delaware

      Connie, PatriciaTL and GD Nunes, please excuse the delay in thanking you three for leaving me a reply. My eyesight is much better now which is good because reading is enjoyable again. I still have to see my doctors though which I hope to accomplish in February. Even if I get no better than I am right now, I will be a happy puppy! LOL

    • GD Nunes profile image

      Glen Nunes 

      7 years ago from Cape Cod, USA

      I hope you have continued success with this. Your experience illustrates one of the more "interesting" things those of us with MS experience - trying to figure out what is an MS symptom and what is a drug side-effect. Sometimes symptoms can even be caused by another illness. Having MS doesn't protect you from other ailments, so how do you know if you've got a new medical issue that needs attention, or if you're just having an exacerbation of MS symptoms? Unfortunately there's no easy answer. Thanks for documenting your progress.

    • PatriciaTL profile image

      Patricia T Lowe 

      7 years ago from Lehigh Valley

      I'd really glad to hear that the medication seems to be working. Hope you continue to feel much better !

    • Connie Smith profile image

      Connie Smith 

      7 years ago from Tampa Bay, Florida

      This gives me part of the information I was seeking. So happy that you think the medicine is helping, and praying that your vision problems are only temporary. Hoping you get to that opthamologist asap. We do NOT need vision complications here, missy, especially if oral steriods can help.

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