Genial Gilenya

I am now taking the oral medication Gilenya (fingolimod). It was first synthesized in Japan in 1992 by chemical manipulation of a naturally occurring antibiotic, and finally approved by the FDA in 2010 as “the world’s first oral MS drug“. 
 
I call it genial because compared to giving myself daily shots, it is just a daily pill I swallow. But “genial” by no means suggests benign. This drug is as toxic as everything else I have tried. Incidences of PML occurring in people taking Gilenya do happen.
 
This Method
 
Everyone’s immune system contains lymph nodes, which are tiny glands containing immune cells (AKA white blood cells) called lymphocytes. Lymphocytes are usually helpful, but in MS they get confused and attack the central nervous system (CNS), and permanently damage the myelin sheath.
 
Gilenya activates sensors on your lymph nodes to restrain some white blood cells. That way, these blood cells aren’t released into the bloodstream, where they can attack. (Other lymphocytes are still circulating and available to do their job, watching out for intruders like viruses and bacteria.)
 
It also activates sensors on your heart, which can cause your heart rate to temporarily slow down. So it is recommended that all users be monitored by a medical professional for at least six hours after the first dose.
 
My Experience
 
I have been taking Gilenya since April 2012. This is from an earlier blog post:
 
…I packed my backpack with items to stave off the boredom of sitting around that long: two books I am currently reading [one fiction and one non-fiction], a book of Sudoku puzzles [I’m addicted!], lip balm…
 
We also brought a cooler with yogurt, granola bars, and sandwiches.  [My husband] brought a fingertip pulse oximeter so I could check my pulse regularly on my own.
 
In the end, the whole experience was pretty anti-climactic, which is probably the best-case scenario, really.  I read one book the entire time, and they let us leave before the rush hour started.
 
It was a record heat in SF, which lent the whole outing a surreal feel, and now that I’m onto Day Five, it is like it never happened…
 
It’s now been 6 years and I have tolerated it fine, but it has not made any amazing difference, as I had secretly wished. 
 
Things I’ve Learned
 
Gilenya might increase your risk of skin cancer. It can render a “live” vaccine inert while using it. And it can interact with a multitude of drugs, including vitamins, and herbal products.
 
It is rare but macular edema (a correctable eye condition causing swelling and blurry vision) may occur within the first 3-4 months of starting. It may be confused with an MS exacerbation, so check with your doctor, and consider annual ophthalmology appointments.
 
Finally, I have started to see reports about a “rebound relapse” phenomenon when users go off it. Obviously, once you go off, you should expect that the “door” of all lymph nodes is no longer being guarded so you most likely will resume MS where you left off.
 
But in about 25% of patients, there is an even more aggressive worsening of MS after stopping and these patients “do not return to the level of function that they had before or during treatment“. This worsening most often happens within 12 weeks of stopping. It is definitely something to consider before you start if you think you will want to go off it to get pregnant, for example.
 
Other stuff

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Yet another swerve

It seems that I continuously need to educate myself about my central nervous system, my immune system and how every new MS therapy works and what it is intended to do. Although I was never interested in science, I’ve become at least curious over the last twenty years.

It seems that I continuously need to educate myself about my central nervous system, my immune system and how every new MS therapy works and what it is intended to do.

Although I was never interested in science, I’ve become at least curious over the last twenty years. 

I also learned that I could inject myself in the thigh weekly with a 1-1/4 inch intramuscular needle for about 3 years on my initial first-line therapy and then, after I developed severe liver toxicity and had to discontinue that one, daily with a 1/2 inch subcutaneous needle for almost 8 years on the next one.

Although I had always before been averse to taking any kind of medication, even aspirin, once I relented to this I started accepting the drug recommendations of doctors and other health care professionals.

I’ve sat through a 6-week IV course of steroids, a 6-month IV chemotherapy regimen, and two episodes of IV infusion with a second-line therapy.

In the past ten years, I’ve had a liver biopsy, a gamma radiation procedure, and many MRIs.

From one therapy, I learned that it is not more beneficial to suffer through fever and that taking acetaminophen to squelch it is not a cop-out.

From another, I learned that icing the area before I injected, as recommended by the nurse, made it painfully excruciating; using heat instead worked way better.

This underscores the idea that what works for one person does not work for another.

After my allergic reaction to it has disqualified the most recent therapy, I am now poised to try the next one, a new oral medication for MS.

Before I start, I have to go for an optical coherence tomography (OCT) test, an EKG, and a skin-cancer screening.

Like I said, I will now need to educate myself on this drug and why I need these tests.  Watch for future posts!

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