Mixed Connective Tissue Disease

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AnnieRae
Regular Member


Date Joined Nov 2006
Total Posts : 76
   Posted 10/12/2014 10:21 PM (GMT -6)   
Hello everyone. My name is AnnieRae and have not posted here in a very long time.

My original diagnosis was in 2005 with Inflammatory Arthritis. I have not had a positive ANA since that time until last year. I have been on Plaquenil and NSAIDS then. I went for my 6 month visit in September and it was positive again with a high RNP. I tried taking Celebrex but was unable to tolerate it so am now just back on NSAIDS and Norco for pain. I have been unable to tolerate most medications I have tried.

My Rheumy said if my pain does not improve I will need a low dose of steroids.

I was wondering who has MCTD and if it turned into full blown Lupus or has just stayed the same.

Thank you for any comments.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 10/13/2014 7:58 AM (GMT -6)   
I have had mctd for about 10 years. It is a complicated syndrome that presents and develops differently in every patient. The classic definition is to have symptoms of lupus, polymyositis and scleroderma. In reality, you can have symptoms of any of those or even other AI diseases. Mctd does not morph into lupus it is a diagnosis on its' own that can include lupus. I presented with lupus symptoms and then polymyositis but never had and definitive scleroderma symptoms.

First line treatment is steroids and often Imuran or methotrexate depending on your particular symptoms. Some cases are mild and very treatable, others, like mine, are severe and difficult to treat. My docs did bring mine under control and life has been good the past 9 years.

Nobody can tell you exactly how your case will develop. Just don't ignore new symptoms particularly muscle weakness and fatigue. Of course, lupus symptoms can include organ involvement so make sure you are getting labs periodically.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

AnnieRae
Regular Member


Date Joined Nov 2006
Total Posts : 76
   Posted 10/14/2014 7:09 AM (GMT -6)   
Thank you so much Bill for your comments. I am in a major flare right now and am hoping to get some relief soon. My muscles do feel weak and I seem to be losing weight. Probably because I am feeling so bad. Hopefully with other medication I will be feeling better soon.

I am so sensitive to most drugs. But hopefully can find one that will work for me. Again thank you.

Have a beautiful blessed day. AnnieRae

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 10/14/2014 7:55 AM (GMT -6)   
AnnieRae,

The only med you are taking to control mctd is plaquenil and it is not the most powerful med. Prednisone is used because it usually works and quickly. Meds like Imuran and methotrexate are added. Your weakness and weight loss could be due to polymyositis and you want to get that under control to avoid permanent muscle damage.

Did your doctor test you for cpk?

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
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