Wednesday, November 5, 2014

Gilenya: My Third Year Anniversary

Wow, I can't believe that it's been three years since I decided to change my direction and switch my disease modifying drug to Gilenya.

I revisited my old blog posts about the long road leading to the "First Dose Observation." I had forgotten about all the tests required before getting the drug, wrangling with insurance, finding a location to be monitored for the first six hours after swallowing one tiny orange and white pill. I had forgotten how really worried I was the night before.

Now that three years have passed, I'm pleased to report that I'm doing very well. I continue to be monitored for liver enzymes (they spiked initially, but returned to normal levels within six months), for vision abnormalities (all clear), and heart condition (good).  My MRIs have shown no active lesions since I began Gilenya, which is a relief because my pre-drug MRI was all lit up like a holiday tree.

The benefits I saw within the first year include the ability to stand for longer periods of time, which makes it much easier to talk to people face-to-face, or to run errands. I'm now able to walk without a cane or rollater, except for really, really long walks. I've gained some confidence to go out into the world.  During that first year, many people had actually commented that it looked like I was getting around so much better.

Now for a disclaimer: at the same time as starting Gilenya, I began physical therapy with a woman who received training in working with MS patients. She was aware of fatigue issues, and was able to create a good exercise program for me, which may have contributed to my improved mobility.  However, I did not have this degree of success with previous PT experiences, so it's suspected that the Gilenya relieved inflammation enough to allow the PT to be effective. You decide.

Unfortunately, it hasn't cured my fatigue or cognitive brain fog completely, but being able to walk more easily means I don't get as exhausted from a simple grocery trip.

I am aware that Gilenya is NOT for everybody.  I've heard from others who have not been so successful, having some unexpected side effects, so I'm not taking this for granted.  I'm thankful that this drug is working for me.  I just thought I'd share my story with anyone who is contemplating this drug and has been reading lots of horror stories.  Here's one success story.

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