did i fail again?


Sorry for the lack of posts… I’ve had WordPress issues on both of the browsers I use (Firefox and Safari), and between both of my jobs, the new business, and taking care of my health, there’s little time to keep checking back to see what works when!

Anyway. About a month ago, when I had the Big Health Flareup (that post comes later, too), a lot of my bloodwork showed my white cell count to be really scary low. Low enough to get the attention of my MS specialist (usually they just blow it off, saying that the slightly lower count is a drug side-effect).

So, they’ve tried me on a no-standard Gilenya dosing which has worked for some: take it on the weekdays, don’t take it on the weekends. (Gilenya works by sequestering some of the immune cells — the white blood cells — in the lymph nodes. This removes them from circulation, but it also prevents them from potentially attacking myelin. Good for preventing MS relapses, but bad for overall immunity.)

I’ve been doing that for a month, and had some follow-up bloodwork done yesterday. But even before I got there, one of the nurses at the MS center called me and said that we need to have a discussion about likely finding another therapy for me.

Sigh. AGAIN?

The first two (Rebif, Tecfidera) I failed because they eventually caused me physical pain (well… Tecfidera caused me pain immediately). This isn’t causing me pain, but it’s apparently destroying my immune system.

Running out of options, here…

Good thing I’m raising money toward a cure every year? Still, it’s not enough…

One Response to “did i fail again?”

  1. 1 Steve Yool

    Hang in there, my dear! You have lots of support!

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