oh, gilenya, gilenya….


MS meds and their side effects. Ahem. I’m sorry, I meant to say, “disease modifying therapy”, as it’s not really changing my disease — just maybe changing the course. Changing the amount of damage my MS does to me. We think.

So, MS being an autoimmune disease and everything, the meds do strange things to the immune system, like taking some of the immune cells out of circulation so that they don’t attack our nervous system (as they tend to do in MS). This, of course, weakens our immune system.

With the other MS drugs I’d tried, my white cell count was on the low side, but still within normal range. Gilenya, on the other hand… has had me significantly below normal. Dangerously so, back in September, when I had other routine bloodwork done.

Gilenya is typically taken 7 days a week. Apparently studies have shown it to have an equal therapeutic effect when only taken 5 days a week (or so we hope?), so at that point, I’d cut down to only taking it on weekdays. Meanwhile, my white cell count came almost back to normal…

I had a routine appointment with my MS practitioner just before the end of the year, and it’s become standard practice for me to give them a vial of blood every month to check on things. I started getting lower again, out of the normal range.

Which hadn’t affected anything… until I got a terrible sinus infection about 10 days ago. (Luckily almost gone. The wonders of modern antibiotics!) Despite my weak immune system, I generally manage to avoid what my students bring in… which always stuns me. Sometimes, however, it hits me, and it hits hard, as it did recently.

And it left me wondering: if my white cell production is overall low, would I be able to fight off an infection effectively? Likely not. In that sense, I’m glad it was a bacterial infection, and that I could have the help of modern medicine.

And if I did end up catching this nastiness as a result of my Gilenya-weakened state, should I be taking the medication? It’s slowing disease progress, they say, but I haven’t had a flare-up since 2012. And, thanks to insurance snafus, I had several month-long chunks with no medications, where I worried about flares — nothing. Which begs the question: do I just stick to the good ol’ diet and exercise routine? I don’t know if anyone can answer that… (the problem being that damage from flare-ups can be permanent… so the risk outweighs benefits of no meds, maybe???)

2 Responses to “oh, gilenya, gilenya….”

  1. What a conundrum! I get a lot of advice about “modern medicine” versus integrative healing methods. We have no way of knowing, do we, how much is the meds and how much is our lifestyle that is helping us keep our illnesses at bay. So maddening! I have nothing really to add except, “I hear ya’!” Sorry you going through this! Love, June

  2. 2 Steve Yool

    I concur with June, and can only offer my own related experience here:I am in active germ warfare every weekday; all kinds of respiratory droplets hang in the air while I am in class. And so, I decided to take a page from Indian culture and take about 1g of curcumin a day. I used to be beset with sinus infections, but haven’t had a single infection since starting the curcumin. So in addition to being NIH-funded for neuroprotection and anti-inflammatory properties, curcumin to ward off garden-variety stuff that keeps us down. So, maybe use more curry in cooking! Oh…and I’ve stopped shaking hands; fist bumps only. ❤

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