It's been two weeks since my second infusion of Rituxan, and who'd a thunk? No pain. Well, almost no pain. Occasional twinges, yes. Momentary annoyances. Difficult mornings getting going. But nothing like the situation just a few weeks ago when I dreaded weekends because I would almost certainly start a flare on Friday which wouldn't fade away until the following Wednesday.
I would be lucky to have one or two "good days" a week. Yikes.
But now? I'm far from a cure -- in fact, they say there isn't one-- but it is possible I could go into remission (with medication), and if I do, I'll probably need infusions every six months for some time to come. But for now, I'm grateful to be almost completely pain free, even if it's only temporary.
During all this RA business -- been going on for two years now (longer when I think back to early symptoms) -- I've had no pain relief medication (except what I had on hand from previous sciatica episodes).
I thought it was odd that no matter how much pain I was in my doctors never prescribed pain medication of any kind. At one point, early on, I was self medicating with Aleve which initially provided some relief, then it didn't. I increased the dosage again and again, until I was up to 1600mg a day or maybe more, and still very little or no relief. Doctor said, "Whoa! Stop! That's too much!"
Well, what will you give me for pain relief? Eh?
The answer was steroids. Prednisone (which I tolerate pretty well; some people don't). High doses tapering off to low doses. A maintenance dose until other medications kick in.
No specific pain medications at all.
The other medications might work for a time -- a few weeks or months -- but then not. I went through a half dozen or more meds trying this and that (I didn't keep track) to see what worked. Nothing did for long.
At one point, three-four months ago, I had tapered the prednisone to 7.5mg a day, the lowest dose I'd taken for over a year. That's when things started going haywire, and I was facing weekly flares. Doctor said increase prednisone dosage: I took up to 40mg a day with only partial effectiveness. This went on for months. The only relief offered was higher doses of prednisone, and when I pointed out even that wasn't working, it dawned on my rheumatologist that something else was called for at least as a bridge until the Rituxan could work.
And so, for the first time in years, I was prescribed an opioid (Tylenol 3) -- which I haven't had to take due to the apparent effectiveness of the second Rituxan infusion. If I do have a flare, however, and the Tylenol 3 doesn't work, doctor is prepared to prescribe (drum roll) Oxycontin.
She also prescribed a stronger version of prednisone in case of otherwise uncontrolled flares.
So far, however, I haven't had to take either one.
I know there is currently a hysteria over opioid addiction among lower class whites, largely due -- they say -- to overprescription of pain relievers among the Lower Orders. So there are any number of restrictions on doctor prescriptions, and I had to jump through all kinds of hoops to get what I got.
And I haven't taken it. I haven't even opened the package.
If the Rituxan works, I won't, either.
I will keep it on hand, however, just in case.
You know what? Chronic pain is a terrible and debilitating thing. I've experienced my share, and I know others who have had it much worse than me. Doctors face a serious problem in prescribing for pain relief -- except, apparently, in certain ruralish white enclaves where anything goes -- because of the opioid hysterics.
I assume that's why nothing was provided to me specifically for pain relief for years.
Of course, if you're among the High and the Mighty, there are no problems at all in getting what you need to control your pain -- or anything else.
None at all.
We'll see how this goes.
So far, so good.