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...
It's been really useful to hear many of your stories - there's nothing like knowing you're not quite the only one.
I'm 33, Male, from the UK and most of my life i have had gut issues, rashes, muscle pain, freezing cold hands that become dry and bleed etc. but was mainly shooed away for being a hypochondriact.
It wasn't until December 2014, just turned 31 that a physio sent me to a Rheumy who diagnosed me with MCTD. I was put on max strength Vitamin D & hydroxychloroquine and by Feb/Marc 2015 i felt better than at any point in my life. It was unbelivable feeling. Doing things I had never done before in the Gym.
Unfortunately, at the time I was still quite ignorant on the risks of MCTD and the lifestyle factors, I thought it was a simple case of taking the tablets and that was it. I used to drink alcohol/caffeine/smoke weed way too much and made the mistake of stopping my medication because my presciption ran out & my symptoms went away and carried on living a very bad lifestyle.
Early last year, i had a employment tribunal, a break up, i was living a very unhealthy lifestyle & not on Hydroxy and i had massive problems. I feel very naive and stupid for getting myself in that situation, but that doesn't help me now.
I was in and out of hospital first 6 months of last year, chronic chest pains, muscle pain, panic attacks, acid reflux, rashes, dizziness, chronic fatigue AND constant bloating and belching. I was givin a Proton-pump inhibitor called lamoprozole & rinitidine which flared up my Lupus symptoms 1000% and destroyed my gut function, constant diaorhea. caused swollen lymph nodes all over my body.
I went from 72KG to 62KG and became very depressed.
At that point, i learned a lot more about MCTD, began drinking ACV, cut gluten & dairy, began (VSL3) probiotics, experimenting with other suppliments Vit D, L-glutamine, meditation & back on hydroxycholoquine (zentiva brand) etc. it's difficult to know which did the most good but i made a lot of progress. No more bloating, belching, diarhea, chest pain, acid reflux accept if i accidently slip up on diet.
This year i was able to begin excercising again and whilst i still had fatigue/brain fog and generally did not feel as strong i was a lot better than last year. Even able to goto hi intensity excercise classes.
Unfortunately - 9 months of progress was undone in March when an STD/STI Clinic gave me the anti0biotic "DoxyCycline" for an infection which flared up my lupus/MCTD symptoms terribly. I'm really upset about being given it as I told them about my condition and it's a known risk factor, and they still gave it too me.
Since then i haven't been able to shift the chronic fatigue, no matter my good habits and my raynauds symptoms keep getting worse. My circulation feels like it's grinding to a halt & I get a lot of numbness and pins&needles in my limbs.
The toughest thing is it feel so stupid, 9 months was a long road back from a dark place to a place of hope and a 3/4 tablets have put me back a long way and now i have new symptoms. It's getting really hard emotionally.
Sooo...that's my story....if anyone has any similiar experiences I'd be really keen to hear from you. Open to any tips/advice on symptoms.
Good luck to everyone.
Neil x
Mary Ann
You will not like my reply, but here it is: Go to AA.
That is what I did, and I wish I'd done it when I was your age. I've been in the program for a little over three years... have not made it through all the steps, I'm up to step eight, but...
Holy crap, it just did wonders for the guilt, the feeling that I might have hurt myself. I am nearly totally free of that now-- the ghastly regret, wondering if it's my fault, all that crap. And I do not feel guilty about taking narcotics for pain or CBD either-- I take as little as I possibly can, it's very clear to me and my doctor how much I need and what I don't need.
Now I know the truth: I've done everything I can to stay healthy. The disease is random, it flares up for no reason, there's nothing I can do about it-- and I don't waste a minute worrying about it.
Don't try to do it alone, AA is too much fun.... I don't know where you are in the UK, but meetings in London are supposed to be amazing. In LA, it's just outstanding... if I were single.... ooh... even at my age, I get a LOT of female attention. I happen to be straight, but my gay friends have similar experiences at gay or mixed meetings.
People in AA do not always understand about MCTD; it's not perfect. There will always be some idiot who thinks you shouldn't take medication, or you're faking it, or whatever... but a lot less than in the general population.
@Ephesians2 - No, never been prescribed prednisone. Only hydroxycholorquine (plaquenil - though we no longer get that brand in the UK). My private insurance no longer covers me, so waiting to see an NHS rheumy in a couple months and will definately ask about it. I've noticed a few people mention it here.
@Katalyzt - Glad we have some common ground on the guilt factor. Will give your advice some consideration.
I really appreciate everyone who's read and/or commented - i wanted to get this out there as much for personal therapy to a group who understands, the interaction is really helpful - makes for feeling less isolated.. As you guys know, it's difficult for "normal" people to understand.
When I got pericarditis, I was actually on a very low dose of acid. This complicated everything enormously. I had terrible chest pain that came out of nowhere. First, I had to be sure I wasn't just freaking out. Then I had to convince my friends that I wasn't freaking out. Fortunately, one of us had not dropped that night and drove me to the ER-- they took one look at my pupils and sent me home because THEY thought I was freaking out.
At my mom's house, I wrote "goodbye" letters to all my friends and a "go to hell" letter to my one enemy and hid them someplace they would be found eventually, but not right away. Then I called my mom and told her to pull strings at the hospital (where she knew staff) to get me admitted. And they got me in, and as soon as they saw my EKG they knew something was very wrong.
I was in for two weeks on heavy steroids, really hairy, but full recovery. Before I was released, I met with the head cardiologist at Mt. Sinai in New York, and I asked him, "Look, be straight with me. Did the LSD make my lupus worse or cause the pericarditis?" (My diagnosis at the time was lupus.)
He looked at me, sighed, and said, "Well, I don't recommend that you continue using LSD, but the answer is no-- that has no effect on either connective tissue disorders or cardiac function. That was simply really, really bad luck."
Hang in there. Your new good health habits may catch up to you yet!