MCTD (Mixed Connective Tissue Disease)

Specialists don't have time to discuss the side effects, only the issues. Unfortunately they are so over whelmed with patients. If you have a good family physician he/she would be a good one to talk to. Do your own research to understand as much as you can works as well. And, of course, joining this group is the best. I have had MCTD for over 43 years so if you want to tell me about your issues, I will try my best to listen and, if possible, help you. We are here for you.

I hope this helps. I am a 43 year survivor of MCTD so I have a lot of issues. I have learned over the years that I am still me, it is my body that is sick. I can still do anything I want but either to a lesser degree or knowing that I will have to endure the consequences. Everything I do is a decision of importance to me. Is it worth it? Can I do it differently so it doesn't effect me as much? Can I enlist help? I don't make plans until I get up and see how I feel. (Retired so I can do this) But most of all I learned that this disease does not own me and I will not let it run my life. With changes to my behavior and activities I am now more in charge. Not to say that some days it fights back hard and I have to deal. But I realize that this will happen and like everything else, it too shall pass. If you have anything you would like to discuss just post it and I will try to get back to you. Best of luck.

Wishing you all the best!

@macalsy You should not have fight this disease on your own. You have a right to a good diagnosis and treatment! Do you have a primary health doctor? Ask if they can refer you to a comprehensive medical center or university hospital. You will find much more learned doctors there. And take someone you trust with you. Someone who has seen/knows of your suffering and can take notes and ask questions. When I first got sick and had severe nausea and ended up in the ER, the doctors just sort of patted me on the head and said not to worry. I finally got some help in the ER when I was non-responsive. None of the doctors knew what was wrong so my husband called University of Colorado Hospital in Denver and we went there. So I’m still here!
Will you call your PCP tomorrow and let me know what happens?

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.

@mctd1972 Wow, you put me to shame with all you do! Goodness, gracious! Welcome to Mayo Clinic Connect. Osteoarthritis seems to be your biggest problem especially because it affects your hands. Here’s a discussion group where you can connect with other members
https://connect.mayoclinic.org/discussion/osteoarthritis-3/
And see what they do for their osteoarthritis. There are many discussions about osteoarthritis so I hope you can find some answers.
May I ask, how did you find Mayo Connect?

I was diagnosed at fifty eight I am now sixty four I take two point 5
And then 5 mg Of prednsone. I also take immuron for Mctd. IM GLAD TO SEE YOU CAN STILL HAVE A GOOD LIFE EVEN WITH THIS DISEASE. THANK YOU FOR SHARING YOUR EXPERIENCE

Thanks-- it sounds like a lot, but many if not most days, I feel like I'm not getting as much done as most people my age who are still working, and the things I get done take forEVer!

The brain fog is worse when I'm under pressure or anxious about something-- I'll put something down and not remember where I put it, which eats more time, and makes me more anxious, etc. The psychological impact of the disorder is formidable, particularly the isolation-- and I've seen some posts about that here, I'm going to go back and troll through the earlier posts-- though I think it's important to remember that the primary cause is physical, and I have only limited, partial control over it.

Thanks for the links to the osteoarthritis groups! That IS what's worrying me most, you are correct-- at least at the moment. I have also started having episodes of low fever with body pain, usually after exercise, which is maddening. Like, why could I ride 12 miles yesterday and felt great, and today I rode four miles and took a 5-minute swim in 80 degree water, and woke up four hours later with severe chills, trembling so bad I could barely hold a glass of water to take Tylenol. These are more like my symptoms as an adolescent, but so far, this just happens a few times a year. It did keep me out of work for a day a few weeks ago.

I found Mayo Connect through a Google search for new articles on MCTD, something I do about once a month. First time this place has ever turned up. I used to be a member of the Daily Strength group for MCTD, but that forum got sold and redesigned so no one could use it, and everyone left.

@kefflew. You sound very upbeat! What are you going to do to “have a good life?” Are you going to take some walks and enjoy the gorgeous trees? They wont be here much longer. Are you going to plant some spring bulbs? That’s on my to-do list.
What’s on your ‘good life’ list?

I am so so sorry to hear of your suffering. Pain can drastically change your life. It becomes this monster that will virtually TAKE OVER! It’s that weapon used to destroy body, mind and soul. How do I know? I too am a sufferer, for more than 22 years. Would be more than willing to share experiences, off line. Not true of everyone but it has been my experience that, Groups aren’t nearly as empathetic as one would hope they’d be. Respond directly, if you’d like. I won’t publish my # on this platform but I don’t mind sharing my email, in hopes of sharing the experience debbiefacts@icloud.com. Stay Strong, keep fighting, as Our Heavenly Father promises, that We Shall Not Die But Live And Declare The Works Of The Lord. He is Faithful to deliver his promises. The ONLY condition to this being activated is Faith & Trust in HIM. Blessing and Peace to you on today.🙏🏾❤️