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...
So, it's been six months since I received a preliminary diagnosis of MCTD from my PCP. I finally saw a rheumatologist today. She was perplexed my last ANA was negative (3 positive, 2 negative over the last 5 years), so she thought maybe my RNP was a false positive and drew a new one. Based on my symptoms and my very elevated, persistant ESR and CRP, she diagnosed me with UCTD and ordered plaquenil. What is your experience with that particular drug? Hopefully, we get everything squared away soon. She told me that the plaquenil should help with the rash I keep getting above my eyes and on my cheeks. She also said it should help with joint and muscle pain. Here's to hoping!
Mary Ann
At the same time, when patients say, "Oh, I didn't know how great the drug was until I stopped taking it," it makes me really nervous.
That's what patients said about Paxil, and now we know (thanks to the RIAT review of Study 329 completed a few months ago) that it basically doesn't work for most people. What was actually happening was a withdrawal syndrome. I'm not saying that's what happens when people go off Plaquenil, I'm just saying it's suspicious if you don't know a drug is working until it's withdrawn.
There are many patients that Plaquenil helps-- but few, I think, who it helps over the long term. That is just my opinion. I'm very interested to find someone who took it for over 5 years and is convinced that it slowed down the illness.
There may be such patients-- the frustrating thing with this illness is that it's almost impossible to know. With MCTD, you could not design a study with matched controls because the prognosis is so different for patients who have the same symptoms. And, because this is a rare illness, it's a good bet that even if you could come up with a good study design, it would be really hard to fund it.
I've never had any side effects that I've noticed.
I would agree that the side effect profile is, generally, not horrible, and it seems like it's rare that people have very serious, disabling side effects. I did not mean to compare it to Paxil in that respect, I think Paxil is considerably more dangerous.
The problem for me is also that the potential side effects hit me where I'm already weak-- I think my retinas are bad to begin with, I'm so photosensitive, and I already get killer headaches. Recently, I've had vague GI problems, too... I think if the possible side effects were rashes, or something I'm not already prone to, I'd be less reluctant to take it.
Also, I have heard there is a problem with the distribution of Plaq that has affected the price. It used to be super cheap, but a couple of factories were closed down, causing a shortage for awhile and raising the price.
Mary Ann