A good Rheumatologist visit!

[MizDiana]

A few weeks ago I asked for some advice from this forum so I'd be ready for an upcoming Rheumatologist appointment. The post is here: healthunlocked.com/pmrgcauk...

A few of you said I should update afterwards, so here it is:

Everything went great! Down to another patient cancelling, which allowed me to move up the appointment to today.

Unlike the first rheumatologist I saw, this one took me seriously. She listened to my description of symptoms, believed me when I related their past severity (even though, as I'm currently on steroids, I looked young and relatively healthy in her office), and didn't take the odd-for-PMR symptoms as reason to dismiss me.

She all-but-agreed that I probably have PMR, although she didn't actually provide me with a diagnosis. (As cranberryt mentioned, there seems to be some block with U.S. doctors for patients under 50 years old - I'm 44.) When she dictated her notes to her assistant, she said I had symptoms consistent with PMR presentation, but that I was under 50 & had negative CRP/ESR. There was other language about possible RA with a PMR-pattern presentation.

When I agreed that it is odd for PMR to show up in someone my age, but tentatively suggested that perhaps unexpected things sometimes happens post-COVID impacts on immune systems, she agreed that was reasonable. She also waved off the lack of CRP/ESR results, noting that while that was unfortunate, dealing with a lack of clear test results was a common thing for rheumatology.

Frankly, it sounded like there's some licensing or regulatory issue that prevents her from actually saying "I think the under-50 patient has PMR" without potentially getting in trouble. In fact, she told me about another young (late 30s!) patient who had similar symptoms with no diagnosis who responded fantastically well to steroids, and then tapered off them after 18 months. She might have just been reassuring me, but I think the doctor was trying to tell me she'll treat PMR even if she can't call it that.

Most importantly, she took me on as a patient! She was impressed with my mostly-self-managed care thus far (thanks in no small part to advice from this forum, I'd add) and said that the main resource I've been using (a printed-out copy of the .pdf guideline on this page: rcplondon.ac.uk/guidelines-... ) had served me well.

She poked and prodded my hands, elbows, feet, knees and hips. The usual suspects (trochanteric bursitis) were very sensitive, but she did find a few areas that were tender that I didn't even know about until she pressed on them.

She cautioned that steroids can mask other conditions, and that PMR can both mimic other conditions and potentially change into them (like RA) over time. She wrote an order for standard blood work, plus some additional tests that could indicate RA or Spondyloarthropathy (spondy wasn't something I'd heard of before). And an X-ray, again primarily to rule out Spondyloarthopathy, which as I understand it is inflammation of the spine that can aggravate the hips (and could theoretically cause tense shoulders/neck).

Despite my age, she asked about jaw pain & temple headaches before I got to it. Even though I've had relatively little (one day of strong jaw pain, 5-7 days of aching along temple, in front of the ear in the last year when symptoms have been strongest), she said I should take them seriously. That she doubted I had GCA if those symptoms are often not present when others are, but to keep close watch of any similar symptoms or vision changes. She said an ultrasound would likely not be useful if I'm asymptomatic & on steroids but that she would do one if symptoms return/as part of other tests that can't be done until after tapering off steroids.

My treatment is unchanged, though now under her supervision. She approved of the taper I've been on, and noted that even without a firm diagnosis, continuing PMR treatment is also useful if I'm facing RA or Spondyloarthropathy so it made sense.

She even took note that I'm transgender, ruled out hormone changes as a cause of my illness by asking about treatment timelines, and did not engage in Trans Broken Arm Syndrome (i.e. "Oh, you have a broken arm? It's probably because you're transgender!")

Overall, I feel very good about the appointment even though treatment isn't changing at all. I feel confident a capable doctor is going to be on the lookout for what I don't know what to watch for. After the appointment, I noted that I hadn't realized how resigned I was to managing my own care. And I was surprised at how relieved & supported I felt.

[SheffieldJane]

That sounds like a very positive appointment, I am glad you felt supported.

[PMRpro Ambassador]

When you next see her - tell her I am very impressed!!

Ankylosing spondylitis can present looking just like PMR in the early stages - I know a few youngish patients whose diagnosis was PMR first and later changed to AS. Because it is most commonly seen in younger males, many doctors (who should know better) don't think of it when faced with a woman with the symptoms. Or maybe it is fairer to say, whatever gender the patient is, they don't think of it ...

I just noticed in your bio - the criterion of over 50 in PMR tick boxes was actually part of the standardisation of classifying patients for RESEARCH. They were never intended as diagnostic criteria and it has done patients a great disservice that many doctors aren't aware of that.

The varieties one comes across of that syndrome are wide-ranging - not just in transgender patients!!!