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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Remission is over

BuffyS
BuffyS
Hi, all. I was very active in these forums a couple of years ago when I got very sick and was diagnosed with MCTD and fibro. Lost every ounce of excess fat on my body, was very weak, fatigued, and suffered constant muscle and joint aches and pains, all the peripheral neuropathy we are all well familiar with. Horrible, endless insomnia.

I reached a point where if I missed one dose of my gabapentin, I would start hurting really bad. But with time, the pain gradually eased off, and I found myself taking less and less pain pills. By December of 2012, I was pretty much symptom-free and stopped seeing rheumy and stopped all meds.

Well, here we go, remission is over. I have been getting that all-over aches and pains, the dreaded tingling and random sharp pains in my feet, fingers, wherever. Good thing I still have a 3-month supply of gabapentin because I can't get in with my rheumy again until June 23!!! They are going to start from scratch with the blood tests, no doubt.

Anyone else go through remission, just to find themselves back to square one?
MToennis
MToennis
Sure! But my remission lasted about 20 years! I remember my dr telling me I would have problems again. He didnt know if it would be 2 weeks, 2 months or 2 years! LOL! I wish that you again get a remission. I was able to do a lot of living during that time!
Mary Ann
BuffyS
BuffyS
Wow that's great! How long has it been since your last remission ended, if you don't mind my asking.
MToennis
MToennis
It has been about 8 years since this started up again, but my last 2 blood tests have been normal. 0 ANA and RNP and my lymphocytes and white blood cells are at normal levels. Still having some symptoms but I am getting along. I have a very poor energy level but I think that is due to some heart meds I am taking. I am trying to get that changed right now.
Mary Ann
BuffyS
BuffyS
It is so disappointing to be dealing with all of this again. My PCP is fabulous; he agreed to go ahead and order some of the basic tests so I have something up to date for my June appt with rheumy. He told me to go ahead and take the gabapentin that I still have from 2012, since it definitely helps the pain.

Tried to go out and enjoy the spring weather but bending down to pick weeds is no longer relaxing. It hurts my back, my knees, and exhausts me. I'm 58 going on 80.