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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My left hand

I am still waiting for my first dose of the oral MS med. In the meantime, I am wrestling with a splint on my valuable, only-working left hand.

A horse! a horse! my kingdom for a hor…er, thumb!

I am still waiting for my first dose of the oral MS med and the requisite 6-hour observation immediately after.  In the meantime, I am wrestling with a splint on my valuable, only-working left hand.

At the beginning of this episode, I started to get pain in my left wrist.  After I complained several times to OH, he finally got me to make an appointment with The Quarterback. (I tend to down-play any health anomaly at first aand maintain that doctors are too important to be bothered.  Notice anything about that? Avoidance = Denial!)

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Fearing carpal-tunnel, I was relieved to hear her tell me it was tendonitis.  She wrote me out aprescription for 6-weeks of hand-therapy and another for extra-strength ibuprofen.

My-splint

The next day, we drove up the freeway a few exits and pulled into the parking lot of a local gym.  The hand therapy office was upstairs.

I was still in my wheelchair so I had called ahead to ask about accommodation.  I was assured that I could use the elevator in the gym.

But instead, when we got there, we were confronted with the first of two "lifts" to get to the top floor. This was "the elevator." I wheeled into the first, which was only big enough for me and my chair.

Once OH had made sure that my brakes were locked, I pushed the button to raise the platform while he climbed up the handful of stairs and met me at the lobby level.

I rolled out of the cage and OH wheeled me over to the taller lift, and we repeated the procedure. 

It was sooo slow and shook violently as I reached the top. I was annoyed by that but OH told me later that waiting for me and suddenly seeing that, "took 10 years" off his life.  [Awww, so sweet!]

He pushed me into the therapy suite and we were directed to the small office at the back.  By this point, I was not impressed at all and muttered to OH that in my opinion, I only needed to come this one time, and then could do the exercises or whatever by myself.

He told me to reserve judgment and we entered the office.  And met the two very trained and super friendly therapists.  I will keep the appointments.

I learned that the tendon that runs from the middle of my thumb to my elbow had become swollen and inflamed.  Amazingly, the tip of my thumb, and the rest of my fingers are controlled by other tendons.  The therapy consists of gentle stretching and heated massage. 

Then my hand was traced and the markings were transferred to heavy plastic, cut out and warmed in water until it was pliable. 

Finally, I was instructed to rest my elbow on the table in front of me and hold up my palm, bend my finger to my thumb in an "ok" sign, where the warm plastic was wrapped around my thumb and wrist.

The plastic hardened, straps were affixed, and I've been instructed to not take it off for six weeks, except for temporarily, to gently wash, stretch, and massage.

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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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