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...
I'm 20 and I was diagnosed with MCTD with systemic sclerosis at 16 after originally being diagnosed with arthritis at 11 (which now we believe to have been MCTD from the start) so for 9 years! I have had 2 severe episodes one when I was 11 and one when I was 16 which led to me being hospitalised for 5 weeks! I've been on prednisone for 2 years both orally and through high dose injections in hospital (I can't spell lol) but not now since I was 18, cyclosporine (which I stopped taking about 6 months after my severe episode because I didn't like how they made me feel, I didn't tell my doctor), methotrexate (from when I was 11-15 orally but I'd never take them and lie to my doctor as she'd say you're getting better but I wasn't taking anything so I was happy cause it was my body fixing itself - then I went on them through injections as well as etanersept for about a year which I couldn't skip as my mum would monitor them) both these I believe ultimatly led to the crumble of my body (especially etanercept - I can get more information on this if anyone wants - my mums a doctor and is massively doubting of it so I'm happy to give more info on that). Right now I'm on hydroxychloroquine and nifedipine and I never take them, like nothing! For the past 3 years I've never taken a thing and been fine! My hands are always blue but I'd prefer that over how sick the nifedipine makes me feel! My joints hurt occasionally but nothing an ibuprofen can't fix, if they're really bad I'll just have a day of rest or take it easier. I get ill quite often with infections but never had another case of septicima (I'm very aware of the risks and get myself seen fast). I am tired a lot but I try to just eat a lot of protein to stay active!
I go to university so my life is quite relaxed in terms of I don't have to work mad hours every week.
i just wanted people's advise really on like if you think I'm being stupid (like I know I am not taking them) but like I hate the side effects especially with the nifedipine (I've tried lower doses) and also has anyone got an opinion on medicinal marijuana. I, myself, don't do drugs however I am aware of the medical benefits of marijuana for the joint pain especially. Just any advice really I've never met anyone even with arthritis like as a kid when I was first diagnosed I was very adamant that I was fine and to an extent still am now.
The disease really does scare me, especially when I read about it on the internet, I don't want to look back and be like shit I should've taken them like I hate not knowing when the next flare up could be.
Side effects I feel off nifedipine:
-dizzy
-head ache
-eyes hurt
Thank you
But no, you are not being stupid. You are being smart. I feel it is senseless to use drugs like methotrexate, and even have doubts about about Plaquenil (hydroxychloroquine) in the absence of pulmonary symptoms or progressive sclerosis.
I do not think medical marijuana-- precisely-- is a good option. You're too young; trust me, you don't want to wind up smoking weed for 30 years with an illness that gives you brain fog!
HOWEVER... CBD with small amounts of THC is a completely different animal. See my post "Hope" downthread for ratios and amounts. I find it very effective for many symptoms, particularly joint pain and mobility issues, as well as clearing brain fog. I sit down to write my clinical process notes and holy crap, I type fast and the notes are sharp!
By the way, I'm 59 years old and was diagnosed at around 16 or 17. I still ski and bodyboard for short sessions (though I also have "turnaround" days when I plan to go out, but symptoms make it too dangerous.) Playing guitar got a little more difficult recently, but I still have good days.
Diet is important, so is exercise, if your doc will approve. Stay as active as you can. Hope that's helpful.
Especially the 'hope' post you left, makes me really envy the fact you have the opportunity to access it!
The more posts I'm reading on here the better it's making me feel about everything
I personally would not want to take a meds that makes me feel that bad. I have stopped meds Drs have said I should take due to side effects, but the Dr did know I stopped them and worked to help me get something that did not make me feel so bad. I turned down methotrexate due to just reading about the side effects.
So, good luck with this journey. Do your best to take care of yourself- eat right, exercise, get your rest and all that. Keep in touch. Many of us started this as kids or young adults and can help you with some of your issues and you can help others too on their journey!