Happy anniversary to me! One year ago today I took my first dose of Gilenya. My heart rate waxed and waned that day, but in the 12 months since my life has steadily improved. I don’t expect roses today, but I am ecstatic that the drug is working for me. Until this time last year, I was in a pattern of a relapse every few months. I have now been relapse-free for one year and counting! So far, Gilenya results have been fantastic.
I began the journey secretly hopeful that I might be one of those few people who miraculously have so many of their lesions shrink and heal on Gilenya, but I was also reasonable. Most of my damage is well over a year old, and most neurologists will tell you to stop expecting any improvement after one year. May 5 2011, deep down I believed that I was stuck with what I had in spite of any contradictory fantasies.
What’s changed in one year of Gilenya use?
- Before Gilenya, my husband had to massage knots out of muscles in my right arm, right leg, abdomen, and back several times daily. Now this is only occasional and typically only for my back.
- Before Gilenya, I frequently suffered through the MS Hug, (albeit sometimes mild). Now this is very rare.
- Before Gilenya, I faced the stress of frequent injections. Now I just pop the pill and don’t worry about it.
- Before Gilenya, I had significant disability in my right arm and hand dating back to my first serious attack. Now I can snap my fingers again. I can pull a bow across violin strings again. I can write a letter without exhausting myself.
- My ability to not fall on my derrière during living room yoga has skyrocketed.
- For the duration of my use of Gilenya I have been on my longest relapse-free streak since my diagnosis.
- A single negative change is that I feel more hyper-reflexive than I previously felt.
What hasn’t changed?
One of the symptoms that affects life the most hasn’t changed – muscle fatigue in my right leg. Standing and walking are as difficult now as they were when I experienced an exacerbation following a bout of influenza a couple of years ago. Will this eventually change? I pray that it will. Hiding my limp is easier now, but I cannot detect any other degree of healing.
It is so hard to believe an entire year has passed. The time has crept up on me as have the small gains in ability.
The safety profile for the drug has changed in this time as well. New fears of PML (an often fatal brain infection) have risen with the PML-related death of a patient on Gilenya. My new, more cautious, neurologist has ordered additional tests and more frequent MRI as a precaution.
What side effects have I experienced with Gilenya?
Side effects for Gilenya will vary from person to person – I touched on this previously in this blog post. My personal experience with this drug has involved these side effects:
- slowed heartrate
- decreased lymphocytes
- shortness of breath
- abnormal liver test results
- dry skin
- increased nerve pain
I asked my husband what changes he has witnessed in me. The most obvious change he has seen is my decreased muscle pain. This makes sense as he no longer has that second unpaid full-time job of turning rocks under my skin back into muscles.
Is it worth it?
From my perspective, YES! If you’d like to know my full history with Gilenya, take a look at the Gilenya page.
How has your MS therapy affected you?