Give me a doctor who is *curious* about my rare autoimmune disease over a doctor who thinks they’re an expert any day…
Internal medicine doc has been *so* engaged and curious and willing to think outside the box, but can’t/won’t override rheumatology. Rheumatology seems to think they know all the answers and want to defer to “established clinical practice.” But that doesn’t really exist for RP!!
Rheumatologists almost invariably wind up treating RP like seronegative RA with airway problems. But the more research that comes out about RP, the worse it seems like this practice is. If anything, RP is more like vasculitis and autoinflammatory disease. But w/no blood markers.
Anyway, it sounds like rheumatology’s *grand plan* is to do nothing (other than re-starting my methotrexate). Which is particularly galling after they stopped me from getting my third COVID shot on the grounds that I’d likely be getting a steroid pulse.
And they seem unwilling to do *anything* to prevent me decompensating after discharge & thus bouncing right back to the hospital within a few weeks. Which was supposed to be the point of keeping me after my possible-toxicity symptoms resolved.
(Creatinine finally back to normal.)
(Creatinine finally back to normal.)
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