Arthritis update (personal note)

My familial arthritis showed up in one finger a few years ago, but in December of 2015 it became a bigger deal [1]. It looked like an early and fast moving symmetric osteoarthritis (OA), but then so did my mother’s before it morphed into something like RA (which ate lungs, joints, etc). OA is really a junk drawer diagnosis so I ended up calling it “familial arthritis”.

After a bit of personal research I ended up with an eclectic rheumatologist who suggested hydroxychloroquine (HCQ). This is a popular Lupus and RA med that started life as an antimalarial. It’s generally well tolerated with one minor side-effect — you can lose your vision. [2]

HCQ has been since tested experimentally in osteoarthritis — and it didn’t seem to do anything. [3] It did work for my mother’s RA though (where it is known to work), and her disease started out looking like mine …

So I’ve been on the HCQ for about two years.

Has it worked?

There’s no way to know, I can only present circumstantial evidence for one person. I have no idea what the disease would have done without treatment.

The joint deformity has not progressed much. To track joint changes I bought a ring sizing set and I use it to measure a selection of PIP (small, distal finger joint) and PIP (join in mid finger) sizes. There hasn’t been much change in joint deformity over the past two years; interestingly the worst measurements were the first set. That’s probably measurement error or some initial soft tissue swelling that’s diminished. 

I don’t have any finger joint redness or pain any more. Sometimes I forget to take the HCQ and I imagine I have some hand stiffness and joint aches — but that seems too fast to be a med effect. I think it’s my imagination. (Though we don’t have a good story for how HCQ works, so who knows.)

My knees aren’t worse; they are better than they were before I started the HCQ. I still do 230 lb CrossFit deep back squats. (I’m a wimp. Average strong guys do well over 350 lb.)

And, yes, I’m still doing the CrossFit. The rheumatologist approves. I thought I’d have to take up underwater hockey instead but I put that one off for now. 

It’s only been two years though. I’ll be more impressed if this is still true in two more years.

- fn -

[1] When I search the blog I see a few prior posts on knee and wrist exercise related aches that were, in retrospect, part of the arthritis.

[2] There are eye exams to try to spot this early, but we know in animal models that the chorea disease progresses for some time after the medication stops. We don’t know the real frequency of this complication — there’s at least a 1/20 chance I’ll get it.

[3] OA, like autism and schizophrenia, is an ill defined collection of things that’s damnably hard to study.