So, anyway, my excellent neuro - Rima Samira Ash, affectionately referred to by me as Birdgirl - has taken me off Avonex shots after nine years and switched me to a pill, a drug called Gylenia.
On the face of it, oh YAY. All good. After nine years, the only four injection sites that were ever usable on my body are masses of subcutaneous adhesions and scar tissue. I can't do metal needles, so the shots were courtesy of a BioJector. Plus my husband Nic, who had to administer the shot every Monday night, was increasingly unhappy about it, because they were getting more and more painful as we tried finding somewhere that wasn't scarred.
A pill, instead of a shot? Oh yes. Yes. Except for one little drawback.
Gylenia started out life as a drug for organ transplant patients to take, to trick their bodies into not rejecting the transplant. It does this by preventing the immune system from releasing lymphocytes (that's the white blood cells). With an organ transplant, the patient's immune system will see the new organ as an invading body, and try to kill it with lymphocytes. Nothing personal, it's just doing its job.
With MS, the body sees the myelin (the sheath covering every nerve in the body) as inavaders, and releases the white blood cells. Attack! Children of the night, what music they make! (insert gratuitous Dracula reference here) Unfortuately, when you kill the myelin, you kill the nerve, and the patient ends up with Bad Things happening. Make no mistake: this disease sucks like a Dyson on crystal meth.
Gylenia has some potential side effects: bradycardia and macular edema, for instance. So the week before the switch, I underwent all sorts of tests (EKG, opthamology, etc) to make sure all was well. The first pill had to be taken at the Infusion Center at Kaiser, in case of an episode of bradycardia. There wasn't one; in my usual "in through the out door" fashion, my heart rate went up rather than down. I am nothing if not consistently contrary.
But the drawback with Gylenia, for purposes of this post, is that item 3 on the list of issues with it is basically "Dude. Don't get sick. You get an infection, you're pretty much hosed." Basic math: if I get sick and they give me anything at all that tells the body to release lymphocytes, it's hamstringing the MS medication.
Unluckily, my husband caught the superbug cold that's been rampaging through NorCal the past month. He was down with it for over two weeks and is still not back up to full health. My mother-in-law caught it and, as she puts it, was hammered.
I started showing first faint symptoms mid-week: slightly scratchy throat, the occasional sneeze. Saturday night, my temperature was just above 94 degrees. Normally, even the worst colds last about three days in me - the odd thing about the MS is that tends to push off the usual illnesses with both hands. Not this time.
Tomorrow, I have to get hold of Birdgirl and find out what in hell we do. Because this is really kinda scary. I have the feeling it may be galloping towards fullblown pneumonia and you know what, having survived damned near everything the Health Demons have thrown at me thus far, I don't need my lungs damaged.
There's also the "I'm trying to write and I'm coughing up stuff even I don't want to know about and my head feels like business end of a feather duster and WTF MAKE IT STOP NOW" aspect of this.
Immune issues. They're what's for dinner. Or the other white meat. Or is that me...?
Causes Deborah Grabien Supports
EMILY's List (early member), Amnesty International (member on two continents for thirty years), Animal Welfare causes (we rescue feral cats), NARAL and...