Tuesday, February 8, 2011

Writing Blogs Whilst The Sun Shines

Mollie writes:

I've been on a new drug for multiple sclerosis, gilenya. This has been a gift from GOD (God is in caps for a reason!) and I'm very grateful for it. It's taken orally, which is super duper since the drugs I've taken before were only available as injectables.

These drugs were interferons. I started with Beta Seron, moved on to Avonex, and then hustled down the pipeline to Rebif. In the interim, I also quit the interferons to take part in a double blind study at the Oregon Health Sciences University for a peptide based drug, also injectable.

Beta Seron and Rebif are sub-cutaneous injections, so all you really need is a tummy and a behind with some nice fatty tissue. No problem for this chick. But they were absorbed quickly, so you did your injections every 48 hours. The Avonex was into deep muscle, but was only done weekly since the absorption rate was slower for muscle than fat. I could go 7 days between self injection and this was good. The peptides at OHSU were given deep muscle at the facility, into my arm, but only required one shot a month.

I liked that one!

But I hated the shots. I hated the big red welts that remained for weeks after the shots (and doing a shot every 48 hours leaves a lot of big red welts). In addition, you'd have a 'shot reaction' within a few hours. This, in my case was a lovely package of 'flu-like-symptoms' meaning total body aches and elevated temperature. This would last for more than an hour, so when I did my shot, I'd do my shot, take 800 mg of ibuprofen AND GO TO BED!

And you had to time the Rebif shots. You can't do a shot closer than 48 hours apart or apparently the sun will fall from the sky. So you can imagine that I HATED myself every 48 hours for giving myself the shots. I had to rustle up courage every 48 hours. It sucked.

Then there is the clinical depression increase associated with interferon usage. I don't know a soul who is happy that she has MS in the first place, and the actual exacerbations were depressing enough. So my provider wrote me script for Prozac and it actually helped some - which was a good thing since the suicide rate for the interferon users was considerably higher than the control group.

So for the past 15 years or so, I've planned my life around shot night. This would occasionally screw up parent/teacher conferences and other child related activities. In addition, I worked outside the home for four years after starting interferon. You can't believe how fatigued I got, having MS, doing interferon shots, and, frankly, dancing the motherhood dance.

And it isn't just the shot reactions that would get to me. Once, my liver just gave up and my liver enzymes shot through the roof. Initially, I was doing Avonex for MS, a steroid for management of the swelling that gets out of hand during the exacerbations that I have, and Zanoflex, a muscle relaxant that would soothe the back cramping I'd get after sitting at a computer all day. So we gave my liver a rest, and I resumed interferon therapy, but with fewer medications that taxed my liver.

And, since interferon is a immunosuppressant (spelling?) it left me more vulnerable to infections, etc. It came as no surprise that I developed shingles at the ripe young age of 56. Most folks get it after age 60, when, at last, you are given a free vaccination by your local HMO.

(I say that anyone who had Chicken Pox as a child should have the shot after age 50. But I digress . . .)

We MS'ers do this #$!) because the interferon users experienced a 16% reduction in MS flare-ups. It doesn't seem like a whole lot, unless you're the poor chump who still has exacerbations that she never recovers from 100%. Then it seems like a tolerable trade. Even with the shot reactions, viral infections, liver failures, shingles, etc.

So when I heard that there was a new drug coming down the pipeline that wasn't based on interferon and shots, I was, as they say, pumped. Imagine taking a pill every morning that reduced the exacerbation rate up to 50% rather than a measly 16%. My mother didn't raise no dummies, so as soon as it was approved by the FDA (September 2010), I pushed to change my drug regimen.

I finally got an appointment with a neurologist at the Virginia Mason Clinic who is actively treating MS patients with gilenya, the new oral drug. After reviewing my MRI's, my medical history, having me examined for cardiologic, ophthalmic, dermatologic and other potential complicating factors (it took an entire day of people poking, sticking, and touching me), I was cleared for gilenya.


I got my first dosage of gilenya on December 29, 2010. I had to spend six hours at the clinic after the first dosage since some of us experience a slowing of heart rate upon administration. Fortunately, my ticker was up to the challenge and kept up its end of the deal. So since then, I've taken 1 gilenya orally every morning and voila . . . nothing - meaning no shot reactions, no aches, pains, insomnia, heartburn (from the ibuprofen). AND no new MS issues now for 6 weeks!

But the followup is time-consuming in itself. I'm now being followed by a dermatologist, an ophthalmologist (for the potential for macular edema) etc. Since I was due for a refraction anyway, I asked for a dilated exam and things look great, even my optic nerve, which tends to alter when you have MS.

I suspect the years of interferon usage was good for me (my only attack of optic neuritis was when I was diagnosed with MS in the first place and wasn't on interferon). But boy, do I like the new drugs they are coming up with.

My point here is that drugs are ok - but even under the obsessive supervision of cardiologists, ophthalmologists, dermatologists, internists and psychologists (OH MY) can be plenty dangerous. Which is why I told my kids that if I found out they were messing with illegal drugs, I'd hunt them down and HURT them. But seeing their mom deal with legal drugs all these years must have had some impact on them, since they held no tolerance with messing with 'em since they saw all the crap I went through with the legal ones.

I guess there's a silver lining there, somewhere . . . .

Meanwhile, my pupils are returning to their normal size after my eye exam this morning. I can almost read my computer screen without squinting and this is good. But make no mistake, having MS is a burden that is a bunch of crap. And, really, there's not one silver lining since I would have managed to instill The Fear of Mom in my kids in other ways.

End of rant!

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