'mopac wrote:
When you first developed these issues you had an opinion of what you thought it was and took something for it. What was it you thought it was and did that treatment prove helpful?
Almost a year ago, just after the start of the pandemic shutdown, I suddenly developed severe widespread muscle pain and stiffness for no apparent reason. Upon searching the Internet (and as a university faculty member I can also get access to primary medical literature) I found polymyalgia rheumatica, a disease in which the body's immune system attacks the muscles. It's most common in 50+ women of northern European descent (check), and causes severe muscle pain and stiffness mostly in the shoulders and hips, with a very sudden onset (check). There's no definitive test and it's diagnosed mainly by ruling out other things, but it normally responds very quickly to prednisone. I had some prednisone that had been prescribed for my dog, and started taking 10 mg/day. Within a day or two the symptoms had nearly vanished, but they came booming back as soon as I stopped the pred. Bingo, I thought.
It took about 2 months before I could see the only rheumatologist in town, who at first agreed with the PMR diagnosis but also ran a bunch of other tests and concluded that I actually had ankylosing spondylitis, a type of spinal arthritis. The symptoms seemed wrong to me and he based his diagnosis on a positive test for a gene which a bit of reading told me only indicates a susceptibility to AS; most people with AS have the gene, but most people with the gene never get AS.
I asked for a referral to another rheumatologist and after several more months got to see one at UCSF. She told me flatly I don't have AS and initially agreed with the PMR diagnosis, but ran a bunch of other tests and one of them came back strongly positive for rheumatoid arthritis. According to my perusal of the literature, a positive test for this antibody is supposed to mean a 98% probability of having RA. So even though my symptoms don't seem right for RA, that's now what I'm being treated for. However, the RA drug (methotrexate) doesn't seem to have any effect on my symptoms.
I'm still taking a low dose of prednisone (2 mg/day) to keep the muscle stiffness manageable for day-to-day life. If it's really PMR there is no cure, but it is self-limiting and usually goes away on its own after a few years. Long-term use of prednisone has all sorts of horrible side effects--it causes diabetes, osteoporosis, hypertension, cardiovascular disease, etc.--but no other drug has been found to treat PMR. So the trick is to figure out the minimum dose necessary to keep me functioning and hope eventually it goes away on its own. If it's really RA, it won't go away and will cause progressive degeneration of the joints. Which I don't seem to have, yet.
Sorry about the TMI, but I'm very frustrated with this.