Diary Of A Gilenya Pioneer: Fingers Crossed As I Experience Gilenya Side Effects

by Sara on August 28, 2011

Gilenya Side Effects

Several months have passed since I began taking Gilenya on May 5. Today I’m focusing on the drug’s possible side effects and how I have personally been affected. The good news is that I seem to be mostly fine so far. In spite of this year’s gloomy start with 2 separate attacks within it’s first few months, I have had no attacks since beginning this treatment. In hindsight I really do feel that Rebif, and probably interferons in general, are just not right for my body. Now that I have begun the drug I have started to focus on Gilenya side effects.

With my Gilenya followup appointment looming in a couple of weeks, I’ll soon find out if Gilenya suits me in the long run. As you can see, I do have my fingers crossed!

There are some known serious side effects of Gilenya and probably some yet to be discovered. Nothing is yet known about the effect of Gilenya use during pregnancy. We do know that the following side effects are possible :

  • slowed heartrate for up to 1 month after beginning treatment
  • decreased lymphocytes (white blood cells) leading to an increase in the risk of infections
  • macular edema (swelling on or under the retina) – this primarily leads to blurry vision and blind spots (risk begins at 3 months)
  • shortness of breath
  • liver problems (or potential failure)
  • high blood pressure
  • headache
  • flu
  • diarrhea
  • back pain
  • cough
  • infections
  • swelling in the eye

If you have read my other posts about MS, you have probably learned that Rebif adversely affected my liver. After approximately 2 1/2 years of use, I ceased Rebif on the day my doctor let me see test results that showed liver enzymes in my blood were approximately 7 times the acceptable limit for normal people. My neurologist considers this to be about 3 times the acceptable limit for his patients with MS. This was the first time I was allowed to see test results and along with some other events this has convinced me I should always get copies of my test results to personally review.

Reviewing the list above, one would definitely have concerns. During the first few weeks, I could tell that my heart rate was slower, but it did normalize in about one month. So far, I’ve certainly noticed a slight change in my breathing, but the change is relatively mild. Blood pressure is always high for me due to constant pain and muscle spasms – it has been controlled for the last 2 years and has not changed with the addition of Gilenya to my pillbox. My optometrist has cleared me, for the moment, of any signs of macular edema. And finally, last week I had the necessary blood tests done to check my liver enzymes, my lymphocyte count, and various other stats that seem irrelevant to me. I will learn the results in 2 about 2 weeks.

Having recently joined Facebook, I am part of the Gilenya (Fingolimod) Users Support Group. I heartily recommend this to new and potential users. The discussion is largely about side effects, tips, etc.

Having learned that I am not alone in some changes I experienced after starting usage, I want to add a couple of unofficial side effects to the list above based on my experience with Gilenya.

Insomnia – For the first couple of months after beginning Gilenya, I only slept for about 3 to 4 hours per night, even with the futile use of Ambien. I can say with certainty now that I have not had insomnia for weeks, and my sleep has never been better. Before my diagnosis I seemed to always have insomnia. On interferon my sleep was often interrupted by the flu-like symptoms that tend to occur for most of us for several hours following a dose.  On Gilenya, after enduring the initial insomnia, I usually sleep like a baby. This seems very common among other users – many of which began taking Gilenya in the morning rather than at night and used Sleepytime Tea by Celestial Seasonings to lull them into unconsciousness.

Changes To The Skin – My skin has been brutally dry since the first week of treatment. Many others seem to experience this, but some have developed acne instead. Personally I may buy stock in the wonderful and expensive moisturizer I’ve started using to combat my issue. Regarding those who have acne instead – I wish you luck. I never figured that out in my teens and I doubt I could now.

Increased Muscle And Nerve Pain – My spasticity and flexibility have noticeably  worsened, and it seems that others have also noticed this. Generally speaking, I am in more pain on a daily basis. Some patients take the drug at night to attempt to sleep through this.

Combined with work stress, this issue with spasticity and flexibility has kickstarted a yoga habit for my husband and myself. We aspire to work up to a daily routine (we use DVDs at home – we will never have time to fit classes into our irregular schedules). Doing yoga more frequently opened our eyes to the fact that our yoga equipment sucked. Having paper-thin mats on hardwood floors meant painful ankles and backs and an inability to complete all the poses. Poor straps and blocks meant we really weren’t using them. So we have officially overhauled our yoga gear and are loving the new stuff. This is now our current setup :

This is certainly not the best gear for everyone, but it’s the best we’ve found for us. While I may not bend quite like the folks on the TV screen, I can now dwell on this in contorted positions while being in less pain than before. And that is fantastic.

For my readers who are contemplating what treatment to begin or who are not interested in Gilenya, please take a look at the medications listed on our What Is MS? page. Additionally, I have discovered a valuable resource. The MSAA (The Multiple Sclerosis Association Of America) has developed a program to assist with choosing the best treatment for you from all available options. This program is called S.E.A.R.C.H. This looks like a great service for someone making a change in treatment and for those who are newly diagnosed. Considering the wealth of new drugs and their varied risks working their way through the FDA pipeline, I believe this will soon be even more useful than it is now.

In two weeks, if my test results prevent my continued use of Gilenya I may even need it for my next step forward. For now – I’m just hopeful.

 

Have you experienced unusual side effects of Gilenya or other MS therapy?

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{ 1 comment… read it below or add one }

debi February 23, 2016 at 3:37 PM

U mentioned that you were allowed to see ur medical records. Federal law says they belong 2 u, so u can ask 2 see any medical record/test u want. I always want to see mri so I can see my lesions

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