Wow, an MCTD group! Long-term survivor here, 66 years old, diagnosed in 1972. Initial treatment was 5-10 mg prednisone on alternate days, went into remission in my mid 20s-- supposedly-- but then severe headache began in my early 30s. Been through quite a bit-- accused of being a heroin addict as a teenager (I'd never touched the stuff), been turned away from the ER when I had pericarditis, almost thrown out of high school for 'malingering,' etc. First dx was lupus based on electromyogram though I was antibody negative, had pericarditis several times (decreasing severity with each attack) then mostly just headaches until my early 50s, then two massive DVTs several years apart, (that was when my anti-RNP was finally tested, strongly positive, well outside reference range) then in 2018 had diverticulitis, which is likely a complication-- I have dysphasia pretty bad sometimes, and it seems like peristalsis is impaired at both ends of my GI tract. Then a worse bout of diverticulitis in 2020 w/ small abcess, almost need surgery, but the antibiotics got it-- though the side effects took me back to the ER several times.

What has worked best for me, was low-dose alternate day prednisone initially, a very complex but pretty high-intensity exercise program, complete abstinence from alcohol and all recreational drugs, and very low doses of hydrocodone and benzos. (Not a popular treatment these days, and not an option when working, obviously.) I have a dim view of DMARDs and SSRIs, just my personal opinion. If I meet anyone who tells me, "Yeah, Plaquenil or Methotrexate with Cymbalta or Prozac or whatever have been great for me (for more than a year or two)" I am totally open to revising that opinion, I've just never met that MCTD patient. I really look forward to hearing what's worked for other people, and will always do my best to keep an open mind. I'm also on warfarin for blood clots, prefer that medication because it's more easily reversible, and I'm still doing a few sports.

I'm 65 and still work full-time... oh, well, almost full time, maybe 30 hours a week! I'm a psychotherapist, so I can spread out 15 client hours and 15 hours of admin and paperwork with plenty of rest breaks. Deep meditations every day, at least one 20 minutes, often two and often 30 minutes. I also play live rock shows a few times a year, small clubs and local festivals. Some shows are not so small, like 350 people. So that's the pattern: I can do everything anyone else can do, just not as frequently or for as long.

I am in moderate to severe pain every single day. Headaches are the worst-- I just can't stand 'em. The joint and muscle pain can also be severe, morning stiffness is at least 45 minutes. Started topical diclofenac for osteoarthritis.

I am down to body boarding 4 or 5 times a year, but I can still go out on small days. Went back to skiing this year, kind of crazy, mostly single black diamond and intermediate, but I will take easier double-blacks occasionally, even on later mountains. The key is lots of cross training and preparation, short sessions, and lots and lots of rest. What I avoid is long stretches of 85% exertion. What I seek is moderate periods of 60-70% exertion with only brief peaks of 85%. Body boarding is particularly tricky, because you can't just stop and walk away if you get tired-- and I've learned to stop LONG before I get tired.

Now the big question is: How much do I have to slow down to avoid worse osteoarthritis? I've got stage III in both hands, so there is structural damage, but no fractures-- and I don't want to get them. The OA is bilateral, which suggests MCTD, but worse on left hand, which suggests also overuse (guitar, and exactly the movement for fretting the strings.)

Should I really stop sports now to avoid having OA in my knees, back, hips, etc.? The OA, and more general musculoskeletal pain, is bad enough to wake me up several times on a bad day. OTOH, the exercise helps keep me sane, and helps-- a LOT-- with the brain fog. I rotate through exercises carefully, when I'm really feeling bad, I might do 10 minutes of lap swimming, 10 minutes of elliptical, 10 minutes charging up a steep hill with the dogs.

Thanks, and look forward to getting to know the other members of this forum.