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...

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/ MCTD Support Group

Hi, all, I'm new here, too

Meera
Meera

I was diagnosed a couple of years ago, but only just found this place. My MCTD manifests in severe fatigue, severe Raynaud's (getting worse again, because it's the fall), hypermotility of joints and very thin and sensitive skin, calluses on my fingertips and feet, and joint pain (lower back, ankles, hands). I'm 43, and also have depression, thyroid disease, high blood pressure... you should see the sheer number of pills I take a day!


My rheumatologist hasn't wanted to put me on medication yet -- so far, I seem to have no lung or kidney involvement -- but after this last week's flare-up, he has suggested Plaquenil (Hydroxychloroquine) (had to look that up!). I want to put off going on medication for this as long as I can, but he says there aren't many side effects, and it's a pretty mild medication.


Have any of you taken it, and what were your results?


n2_wishin
n2_wishin
I just started taking Plaquenil two days ago. I am feeling somewhat better today. I also started taking Pilocarpine for dry mouth and dry eyes and I have gotten so much relief from that. The Plaquenil is very expensive $198.00 for 30 days and my insurance wouldn't cover it. I found a website that has coupons for 75% off. I see the one of the main side effects of Plaquenil is nausea and you are supposed to take with food. I have not felt any nausea yet. I was diagnosed with MCTD one month ago. I am just getting started on this.. journey?.. I am really hoping I am just in a flare up and these symptoms will subside. I need to be able to work.
MToennis
MToennis
I took Plaquenil for about 6 years. I really felt better while on it but the max effect does not hit for 3-6 months, so if you do not see immediate improvement, dont give up. I had a lot of nausea at first but it went away after a couple of weeks. But always take it with food. The worse problem with this is eye issues. They usually do not occur during the first 5 years of treatment, but you must have your 6 months eye exams by an opthamologist and visual field studies. I started having some eye issues at 6 years and went off of it. I got by easy but it can be very serious and cause blindness, so get your exams! It used to be a cheap drug, an old drug, but, some greedy SOB decided a way to make a bunch of money. No improvements on the drug or anything, no new research just a higher price!
Mary Ann
MissyK
MissyK
I was told I have MCTD also 1 and half years ago, Been on Plaquenil for the entire time and I feel better but,...,also pilocarpine and it has helped a lot. This is a tough disease and NO one should have to deal with this !!!
Meera
Meera
What kind of eye issues should I be aware of?

I have taken it for a few weeks now and don't notice any improvement, but my doc said it can take months to become effective. I'm kinda muscling through the nausea, but yes, taking it with food can help.

I'm so utterly sick of being tired all the time, having arthritis in my hands, and the most sensitive skin. Hate it.
alwayspeachy
alwayspeachy
I ran out of Plaquenil and thought I'd be okay until the next visit. Fast forward, and I'm in the middle of one of my worst flares yet. Just got back on it, and I'm hopeful it doesn't take as long as last time to show improvement. I totally feel you on the sensitive skin. I broke out from the marker they used at my allergist's office to mark for skin testing! I haven't had any eye issues yet, but I receive regular testing.
MToennis
MToennis
Thought I answered this yesterday. The eye issues are blind spots on the macula. You usually dont notice them until it is too late. That is why you must get the eye exams. The Dr will see them before you notice, in many cases.
Meera
Meera
Oh, I see, thanks! I *am* having eye issues, but I think it's just due to being in my forties, not related to the Plaquenil.

Yay?

;)