MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
My case seems to be unusual in that I am a soon-to-be 72 yr old male. Statistically that means my odds of getting MCTD is less than 1-300,000.
(If the stats found are accurate)
The issues probably began with Raynauds after an MI event in 2008. Had medicated stents, forgot plavix a couple times and bingo...heart attack. The next problem was plantar fasciitis from march of 2010 until June of 2011.
After the plantar partially resolved, inflammation went to the top and sides of the right foot and tendons became very sensitive to pressure. By November the foot was bright red and inflamed and would not bear weight, so three weeks spent with ice and elevation which did not help.
Podiatrist gave a cortisone injection which did help a lot and lasted about four months. Then in May of 2012, a bout of chills followed by 103+ temps which subsided into low grade 99.6-100.4 temps.
Vertigo, painful feet and bad brain fog for the whole summer except a few days of relief here and there. Fatigue a constant, often two naps a day.
Family doctor, internal med specialist and rheumatologist visits from May until November. Sed rate always high. Crp was above normal and ANA was positive a couple times. Was screened for every imaginable disease more than once.
Rheumatologist concluded it was MCTD and started me on prednisone 5 mg AM, 5mg PM. This alleviated the condition but has its own problems. Gradually cut to 7.5 a day and now back to 5mg.
Retired teacher/coach who has exercised vigorously since the late 60's..golf, walking, running, weights..all that except some upper body work is finished.
A good day now is a trip to the store and mowing the yard on a riding mower. Any more and the feet flare up in 24-36 hours.
There is far more useful info on these forums than all the Doctors I have seen ..which includes a holistic group.
Many, trials and errors on my own to find some relief...is it from yeast? Mercury? Has to be a cause. Every time I have used yeast killers or parasite remedies, has resulted in getting sick, toxins in lymph, swollen glands in armpits and behind the jaw, barely able to function.
Even probiotics caused the reaction.
NOW...perhaps a reward for those who read this long story! Let it be said that I know most of you have worse symptoms than I. If I can help in any way, that would be a blessing for both of us.
For whatever reason, my immune system is over reacting so started using green tea extract to promote t-2 cells and try to balance the inflamatory t-1 cells that my immune system produces in excess.
Also watch carbs and avoid sugars if possible and can now tolerate a 20b dose of probiotics. There have been very slow but very sure benefits. I can now work an hour or so on my feet without too big a price...weed whacking, watering, etc.
Any suggestions are welcome and I will be happy to share more with anyone in a similar situation. Success stories are hard to find.
(If the stats found are accurate)
The issues probably began with Raynauds after an MI event in 2008. Had medicated stents, forgot plavix a couple times and bingo...heart attack. The next problem was plantar fasciitis from march of 2010 until June of 2011.
After the plantar partially resolved, inflammation went to the top and sides of the right foot and tendons became very sensitive to pressure. By November the foot was bright red and inflamed and would not bear weight, so three weeks spent with ice and elevation which did not help.
Podiatrist gave a cortisone injection which did help a lot and lasted about four months. Then in May of 2012, a bout of chills followed by 103+ temps which subsided into low grade 99.6-100.4 temps.
Vertigo, painful feet and bad brain fog for the whole summer except a few days of relief here and there. Fatigue a constant, often two naps a day.
Family doctor, internal med specialist and rheumatologist visits from May until November. Sed rate always high. Crp was above normal and ANA was positive a couple times. Was screened for every imaginable disease more than once.
Rheumatologist concluded it was MCTD and started me on prednisone 5 mg AM, 5mg PM. This alleviated the condition but has its own problems. Gradually cut to 7.5 a day and now back to 5mg.
Retired teacher/coach who has exercised vigorously since the late 60's..golf, walking, running, weights..all that except some upper body work is finished.
A good day now is a trip to the store and mowing the yard on a riding mower. Any more and the feet flare up in 24-36 hours.
There is far more useful info on these forums than all the Doctors I have seen ..which includes a holistic group.
Many, trials and errors on my own to find some relief...is it from yeast? Mercury? Has to be a cause. Every time I have used yeast killers or parasite remedies, has resulted in getting sick, toxins in lymph, swollen glands in armpits and behind the jaw, barely able to function.
Even probiotics caused the reaction.
NOW...perhaps a reward for those who read this long story! Let it be said that I know most of you have worse symptoms than I. If I can help in any way, that would be a blessing for both of us.
For whatever reason, my immune system is over reacting so started using green tea extract to promote t-2 cells and try to balance the inflamatory t-1 cells that my immune system produces in excess.
Also watch carbs and avoid sugars if possible and can now tolerate a 20b dose of probiotics. There have been very slow but very sure benefits. I can now work an hour or so on my feet without too big a price...weed whacking, watering, etc.
Any suggestions are welcome and I will be happy to share more with anyone in a similar situation. Success stories are hard to find.
With the feet, I had to stop walking for exercise. Every time I did, my feet became really painful. I walk a little now, but have to pace how much as I still feel it coming back and it has been 6-7 years! I wear orthotics. I found that the night splints helped a lot. The stretching and physical therapy were not the ticket, but do help some people. I found that I was over stretching from the therapist. I am very limber. Most people with this tend to be tight. Ice was a savior and deep massage to break up the scar tissue. I used ice a lot. Finally, I had an ossitron treatment. It finally was what got me back on my feet to some degree. It is expensive, but worth it. They knock you out, put your feet in a water bath and hit them with sound waves that break up the scar tissue. Then, mercifully, they inject xylocaine so you can actually walk out the door! Your feet are very painful for about 6-8 weeks, then start to heal and the pain goes away. In my case, about 90% of the pain was gone.
I remember going Christmas shopping for my kids. One had had back surgery and I had a handicapped tag for her. Normally, I would walk from the back of the lot. ( I also was walking 2.5 miles a day at that time). But, I couldnt do that, so I parked in the handicapped slot, went right to the department, got one thing, paid and went to the car. Thought I would never get done because I could only do one trip a day!
Hope you get this under control. Try some of my foot tips and see how it goes!
Mary Ann
I will look into that foot therapy if things start going worse again. Too much time on the feet will cause a predictable downturn every time. The inflammation kicks in and feet get sore and it is painful to walk. Sounds like you had similar issues?
There is something to the T cell balance thing as the severity of the pain has lessened since starting the green tea extract.
Mary Ann
Your situation is atypical-- but not unheard of.
Here is my back-of-the-envelope guess: You may have had this illness a long time, but your symptoms were sub-clinical, and you beat them back with exercise and a healthy diet.
Think back: Were there episodes of brain fog or fatigue before this? If you were a coach, chances are you ignored it.
You went out anyway. You played hurt. That's what I do. I'm 57, and I've had this illness since I was 15. It was worst when I was an adolescent, though I've had some bad symptoms in my 50s, blood clots mostly.
I find that carbs are not a problem for me-- I need them because I have trouble keeping weight on, same deal with some sugars-- particularly the ones in my bodybuilding milk shakes, which I need just to avoid atrophy. They do make me feel exhausted, double-edged sword, but I need to try to keep building muscle strength because I lose it so fast. But avoiding excess sugar is key, particularly at breakfast.
My symptoms have been bad this summer, and I am down to only swimming three or four times a week, a half mile. (This winter, I was swimming 3/4 to a mile four or five times a week, I think my best time for a half mile of breast stroke was roughly 18:40-- pretty damn fast for pushing 60.) Only body boarding once every two weeks, but I am killing it out there, getting lots of rides and a lot of respect from surfers.
I'm also feeling more upper respiratory symptoms, a little shortness of breath, but that could be because the air is bad.
Keep posting with your ideas. Green tea is a great one, it's been mentioned before, I should really give it a go. I quit drinking and smoking weed four months ago, which helped with the brain fog a lot. I don't forget my damn car keys all the time, and I remember where the post office is-- I love that. Neurologically, I feel 10 years younger, and I think most of that is sobriety from alcohol.
Unfortunately, the headaches and body aches that I hoped were hangovers? Turns out that was MCTD. So, by getting sober, I fixed a bunch of crap I mostly didn't know was broken, but didn't fix a lot of the stuff that I hoped to. Still a huge positive.
The downside is, I think the inflammation is worse without cannabis, and I have a lot of trouble getting out of bed in the morning. I doubt I'll ever drink again-- I barely miss it, and I love being in AA, I should have done this 20 years ago. Maybe after I take my next licensing exam, I'll get a prescription for the green stuff (that's not tea) and see if there's some way I can use it without getting stoned, but every time I've tried that in the past, it didn't work.
If anyone told me I'd be writing a message like this in 1983, I would have laughed hysterically.
The green tea seems to be working so far. Still trying to get to the root cause. Taking turmeric 500 mg and a big protease capsule plus a Kirkman's probiotic at night.
Last winter the same regimen would make me very sick and now it seems to be helping...go figure.
Another curve ball is that 2 beers acts as an immune suppressant for me...works like the predsisone and that is certainly counter intuitive if I have yeast or parasites.
My only real help so far was, to analyze my body's reactions and to analyze whatever it is that "inspires" my body to react with flare-ups...
(this process took me quite a while, so patience is very much needed...)... From then on I tried to avoid such "flare-up inspirations" as much as I possibly can and it worked surprisingly well and has given me only very few flare-ups so far (touch wood...!)... another point is that whenever I feel a flare-up "wants to come along", I "park myself" on the sofa and take a rest, read something or watch a silly film and relax and that helps me often to prevent an oncoming flare-up. I had to train myself for that attitude, because "in the old days" I always pulled myself together and worked all the same, only to end up in in hospital, which made things even worse.... taking a rest beforehand to avoid disaster is so much easier and quicker... but it is hard to learn it and really "stick to it"...
I do wish you good luck and best wishes,
Kristina.