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...
Hey All,
I haven't been here that much, I do check in every now and then. Most things have been going well, at least mctd wise. Some of the side issues are not going so well. My mctd has gone after my lungs and I've done well over the last 10 years, but things are starting to really slide down hill. I am up to 8lpm of oxygen now and I was just hit with a bout of c-diff. For the last few days it actually feels like this could be the beginning of the end.....I've had this feeling before and have bounced back, but I don't have much reserve left. I'm not sure if I want to go the transplant route and I haven't told my family that I'm considering leaving the transplant program.....I change my mind all the time.
I think I'm a little crazy right now, we shall see where this journey takes me. It's been an interesting ride so far.
Thanks for listening
Beth
I guess I have a couple of quick questions, like-- any other biomarkers you would like to post (test results?) What's the list of medications you have and haven't tried and what are you currently on? What activities can you still participate in? Have you gotten any support with therapy?
If I remember correctly, the lung issue is pulmonary hypertension, but.... mmm, I also remember there was something else, or something more complicated about it.
Where do you live again? Is cannabis legal? I don't want to rave about cannabis oil TOO much, and I don't know how it works for lung symptoms, but it's clear that it stalled my symptoms two years. (Again, I'm talking capsules, mostly CBD oil, little psychoactive effect, though there is some.) Now, I'm getting worse again, but it could just be the humidity-- interepisode recovery seems to go pretty much back to baseline, but my worst days are definitely worse and more frequent this summer.
I'm hoping CBD oil doesn't turn out to be like Plaquenil or DMARDS-- good for a few years, then stops working and, for some drugs with some patients, you actually have worse outcomes long term. Doesn't matter, I didn't have a whole lot of other options anyway, but...
Wishing you the best, you are very much appreciated here!
Hang in there
I have minimal lung involvement and remain afraid of the future of this mean disease. Please tell us that you are better. Most of us are pretty tough and somehow rise above our issues.
Prayers to lift you up
Mary Ann
I am currently on
15mg pred . 20mg rabeprozole . 175mg lamotrigine . 20mg citalapram . 1440mg micophenalate . 10mg atorvastatin . 10mg ezetimibe . and a bunch of supplements
I am now also on .25mg of morphine to deal with the cough, My o2 use is now at 9lpm at rest and up to 15lpm with exertion
I have had a couple of scary moments recently and I am now trying to deal with panic attacks.
I have used CBD in the past and have not had a lot of luck with it (wicked dry mouth too) I am trying different strains to see how they affect me, but right now I am using ativan because it is so immediate. I would like to find something to keep in under control all the time.....ativan just puts me too sleep.
MaryAnn, I keep swinging back and forth with the transplant because they seem to keep moving the goalposts. After every bout of testing I go through there always seems to be one more thing they need to check and them another tests that needs to be done. After the angioplasty I will be on blood thinners for 6 months so I won't be able to be listed until I am done with that. It's just getting frustrating not getting a clear answer one way or the other and being stuck in limbo.
Beth2day
thanks for asking.....it depends on the day, LOL I'm still here to complain about them, so that's a good thing