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...
Hello MCTD Support Group,
I am without a doubt so happy to have found this website. April 6, 2016, I was diagnosed with an autoimmune disorder, possibly lupus and the rheumatologist started me on Plaquenil and a short-term prednisone prescription. Jump forward to May 2, 2016 and I am officially diagnosed with MCTD. Interested in my background story? Please see my journal entry.
My symptoms:
- Joint Pain ... every joint. Even my jaw to a point where I can't eat sometimes. Shoulders, ankles, wrists, fingers, knees, hips... agonizing!
- Reynauds ... both hands. First they finger tips would only turn white until a week ago they began turning dark-purple, almost black. So cold too!
- Swelling ... both hands, calves, knees, feet... I look like I've gained so much weight.
- Stiffness ... standing from a sitting position is nearly impossible. I feel like I am 70 years old. Mornings are the worst. It takes me so long to get ready for work now.
- Muscle weakness ... I have almost no strength in my hands anymore. I cannot grasp things, pull things...
- Joints cracking ... all the time! I sound like rice crispies!
- Sleeping problems due to all the pain, even at rest
Does anyone feel like every tendon and ligament in your body is stretched to the max, as if you're made out of piano strings? Some arm movements hurt and I feel like somethings being pinched in my elbow or back of my hand. Also having issues with my ankles and top of my feet. Anything help?
Anything else to look forward to?
I am on a bunch of new meds and want to know if anyone wants to give me any tips on how to deal with some of the side effects or has any general advice on dealing with MCTD.
Plaquenil - I am actually okay with this medication and don't have any side effects with it. I take 200mg twice a day with food.
Synthroid - I have hypothyroidism.
Norvasc - my blood pressure is normal but the dr thinks this will help with the Reynauds. So far, so good. It's only been two days. 2.5mg once a day.
Low dose Aspirin - Also for the Reynauds. 81mg once a day
Allegra - year round allergies... Go me!
Prednisone - this is my wonder drug but hate that it has horrible side effects. For now, I'm only taking it short-term. 10mg for one week, then 5 mg for three or so weeks until I see the Dr. again. Motrin helped but I still couldn't function even 50%. I was taking 800mg twice a day, once in the morning and before bed.
Methotrexate - It took me three weeks to figure out that I had to take this med at night, around dinner time, otherwise I spent days being horribly nauseous. Now it doesn't bother me at all but I also don't feel it really working too well either, at least for the pain aspect. I was taking 5 pills a week, 2.5mg per pill but it was just increased to 6.
Folic acid- 1mg taken once a day except for chemo day.
and finally my birth control pill.
Any advice welcome :-)
I am without a doubt so happy to have found this website. April 6, 2016, I was diagnosed with an autoimmune disorder, possibly lupus and the rheumatologist started me on Plaquenil and a short-term prednisone prescription. Jump forward to May 2, 2016 and I am officially diagnosed with MCTD. Interested in my background story? Please see my journal entry.
My symptoms:
- Joint Pain ... every joint. Even my jaw to a point where I can't eat sometimes. Shoulders, ankles, wrists, fingers, knees, hips... agonizing!
- Reynauds ... both hands. First they finger tips would only turn white until a week ago they began turning dark-purple, almost black. So cold too!
- Swelling ... both hands, calves, knees, feet... I look like I've gained so much weight.
- Stiffness ... standing from a sitting position is nearly impossible. I feel like I am 70 years old. Mornings are the worst. It takes me so long to get ready for work now.
- Muscle weakness ... I have almost no strength in my hands anymore. I cannot grasp things, pull things...
- Joints cracking ... all the time! I sound like rice crispies!
- Sleeping problems due to all the pain, even at rest
Does anyone feel like every tendon and ligament in your body is stretched to the max, as if you're made out of piano strings? Some arm movements hurt and I feel like somethings being pinched in my elbow or back of my hand. Also having issues with my ankles and top of my feet. Anything help?
Anything else to look forward to?
I am on a bunch of new meds and want to know if anyone wants to give me any tips on how to deal with some of the side effects or has any general advice on dealing with MCTD.
Plaquenil - I am actually okay with this medication and don't have any side effects with it. I take 200mg twice a day with food.
Synthroid - I have hypothyroidism.
Norvasc - my blood pressure is normal but the dr thinks this will help with the Reynauds. So far, so good. It's only been two days. 2.5mg once a day.
Low dose Aspirin - Also for the Reynauds. 81mg once a day
Allegra - year round allergies... Go me!
Prednisone - this is my wonder drug but hate that it has horrible side effects. For now, I'm only taking it short-term. 10mg for one week, then 5 mg for three or so weeks until I see the Dr. again. Motrin helped but I still couldn't function even 50%. I was taking 800mg twice a day, once in the morning and before bed.
Methotrexate - It took me three weeks to figure out that I had to take this med at night, around dinner time, otherwise I spent days being horribly nauseous. Now it doesn't bother me at all but I also don't feel it really working too well either, at least for the pain aspect. I was taking 5 pills a week, 2.5mg per pill but it was just increased to 6.
Folic acid- 1mg taken once a day except for chemo day.
and finally my birth control pill.
Any advice welcome :-)
#2 NAIDS (such as motrin, and Celebrex) can be Godsends to us but hurt your stomach. The Dr told me that Motrin is the hardest on your stomach. I ruined mine trying to survive an undiagnosed case of Mono I had years ago. If the other drugs dont get that pain under control, ask about something that might be easier on your atomach.
#3 If your pain is worse in the morning, get into a nice hot/warm shower or tub and stretch. or just do gentle stretching when you wake up. It will help some. Dont sit, lay or stand in one position for a long time. Move around. Mild exercise, like walking in a pool help keep you strong and doesnt hurt as much.
#4 Try changes to your diet to see if you feel better. Cut out glutin for a week or 10 days. Cut tomatoes for a week or so, cut calories if you are overweight. But dont get too skinny, if you get to where you cant eat for awhile you need 15 lbs or so to live off of!
There is a start! I wish you luck on this journey.
Mary Ann
Mary Ann
Running off to a meeting, but one thing I will add: The initial attack is sometimes one of the worst. So try not to freak out too much.
And something else: If you drink or smoke, stop now. Don't wait as long as I did. You probably don't drink with your meds, but I was a real idiot about that for far too long, and I regret it. Wish I'd stopped when I was about your age.
My own initial symptoms were similar to yours except no swelling, less Raynauds, no joint pain, but with fever and (a few years later) pericarditis.
It may be that the condition is milder in men, but the illness did back off a bit after the first year and a half or so, and I had a long (and nearly full) remission from about age 28 until my late 40s, when I got some blood clots, and now the muscle and joint pain is back again-- not quite as intense as you describe, but ramping sharply upwards over the last couple of years. I have never taken Plaquenil or methotrexate, though of course I may have to in the future. Maybe even soon.
I think MaryAnne's point about stomach lining is well taken-- and I also wonder about the long term damage to other organ systems from some of the stronger drugs. My kidney and liver numbers are still good. I wish there was not so much insanity in the news media about the opioid problem-- or, more accurately, that our culture did not predispose so many people to addiction. I find Norco to be extremely effective for pain, I am glad I have a doctor who prescribes it, I am sure I would not still be working at 58+ years old without it. (I've been on the same dose, two 5/350 tablets a day, since about 2004.)
I sometimes wonder... one plausible scenario is that immune disorders are more common now because of environmental toxins, and some accumulating epigenetic factor that is getting more common. I would totally believe that.
But there is part of me that wonders: Maybe in 1925, this disease, and lupus were almost as common as they are today, but they were not diagnosed. Maybe in those days, it was simply called "rheumatism," and patients simply took narcotics for the symptoms, because they were readily available, and culture was generally less toxic and people were less inclined to abuse the drugs.
The first theory is by far the most plausible. And there are many others. But the second one really haunts me, because it suggests that some long-term symptoms might be caused by the drugs.
Many people's lives have been saved by Methotrexate or Rituximab. I've met some of them, personally, not just here on this board. So I'm not slamming them.
But search around this board and see how many people find that those drugs really helped them greatly with day-to-day symptoms. There are a few, but not that many. Plaquenil has a lot more ardent supporters.