I had my followup with Dr. Goslin about the prednisone and whatnot. More shocks and stabs, more with the scrapey tool against the arch of my foot, more of the “hold your arms out” pushy/pully tests. She concluded that there’s no difference between this session and the last. So that either means the prednisone is keeping me stable, or my progression is just so slow that there wouldn’t have been a difference anyway. She’s taking me off the prednisone now, and we’ll check back in a couple months to see which is the case. If the prednisone was helping, then we’ll have to talk about alternative treatments, maybe IVIG.
You can’t, of course, just stop taking a steroid. It’s a recipe for bad times. So we are tapering me off; down 30 mg from the 40 I was taking, for 4 days, and then down 5mg every four days after that until I’m done. I’m happy to be done with it. I’m grateful that the bitchy side effect never happened; as side effects go, weight gain is not that terrible. It still SUCKS, do not get me wrong, but at least I wasn’t screaming at my loved ones while I bloated up like a whale.
Dr. Goslin is still a little stumped by me. I’m just…odd…enough that she’s not comfortable putting the ALS stamp on my forehead with assurance. She’s like, 99.9999999999999999999999999% sure that’s what’s going on, but how did she put it, something to the effect of, my symptoms are exceptional outliers. So basically, “I’m really pretty sure that this is ALS, but juuuuuuuuust in case some years down the road it turns out to be something different, remember she wasn’t completely certain.” She asked that I be open to further experimental treatments as ideas occur to her.
Let’s see. The only other thing going on with all of this is that I have a cough – which may just be a cough; sometimes? You just get a cough. It’s been about a month now, though. Eeeeeeverybody in my office got some kind of plague, but I don’t think it’s that, as I FEEL okay, it’s just that I cough and clear my throat a lot. My nephew was sick about a month ago and had a cough with it, but it also had a fever, which I never had. And my coworkers and nephew are all better now. For an unrelated reason, I was checking on the various side effects that my Fistful O Meds have, trying to track down the actual culprit for the heartburn I have a lot even though I’m taking ranitidine now. I found out that one of the possible side effects of riluzole is…coughing.
I’ve been on riluzole…about a month.
I really hope they’re not related. It would be a REALLY SHITTY CHOICE, do I live for a little longer? And have a cough for my entire life? Or no cough, but dead sooner. Or potentially take ANOTHER med to counter that.