Patient Comments: Connective Tissue Disease - Experience

Question:

Please describe your experience with connective tissue disease. Submit Your Comment

Comment from: Hope, 35-44 Female (Patient) Published: February 24

Twelve years ago I was told I was borderline for lupus by a rheumatologist, and was told I had MCTD (mixed connective tissue disease) by an ND (naturopathic doctor); recent testing indicates the ND was mostly likely right. During flare ups the pain was so intense that I started to cry simply putting face cream on. The pain in my foot was so bad that I couldn"t wear a shoe without excruciating pain - and strong medications didn"t help at all. I was told to go on Plaquenil, but was scared about the possible damage to my eye-sight. Instead I looked into everything else I could possibly do. I ended up adopting a vegan diet for other reasons. Slowly my symptoms disappeared, and I have not had any of these symptoms again. I decided to share my story, in case it helped others. The diet did not change things over night (more along the lines of months), but I truly believe it has helped me to slowly get better, and now stay in remission for so long.

Comment from: #skindisorderssuck, 25-34 Female (Patient) Published: October 31

I have been biopsied and was told at age 20 that I have discoid lupus. I have been on all medications like Dapsone, Plaquenil, prednisone, Cellcept that worked, but it's dangerous to take them for too long. And not to mention not being insurable, it's highly expensive. I'm now 33 and just had two biopsies done on my rash that has never ceased the entire time and has destroyed my looks and life. I'm waiting for results of my ANA (antinuclear antibody) and SED (ESR) levels. I've always tested negative for lupus on blood work. But after an upper respiratory infection I tested positive for Sjogren's. I've had platelets attacks and it almost killed me.

Comment from: mother, 25-34 Female (Caregiver) Published: September 27

She was 2 when they found she had Von Willebrand disease. Then a few years later it was gray platelet syndrome. She has learned how to live with these bleeding disorders. Then in 2017 July her body started to fight itself and now they have found she has mixed connective tissue disease. It is now day by day, and the doctor she has is great and sees her every week. I will keep posting as we go.

Comment from: gopzz, 19-24 Male (Patient) Published: June 02

I am in college. I"ve been suffering from a mixed type of collagen disease. It has almost been 13 years, none of the doctors recognized it first, but finally it was recognized by a doctor. From the last 5 years I have been facing a severe joint pain. I cannot move my body parts freely, for which I have been taking steroids, but it has not done any cure to my body.

Comment from: Tiffany Karleen, 45-54 Female (Patient) Published: October 08

I was diagnosed with connective tissue non-specific about 1-1/2 years ago. I was on methotrexate for over a year (that was too much) and I am still on Plaquenil 2 times a week. In an unrelated event I had to have minor knee surgery and developed DVT (a blood clot). I was treated with warfarin. I noticed that my connective tissue disorder and flare ups decreased dramatically. When I went off the warfarin the flare ups started again.

Comment from: deidre, 55-64 Female (Patient) Published: May 02

After receiving chemo and radiation for breast cancer, I was left with all kinds of medical issues. One was called multiple connective tissue disease, due to having noticeable symptoms of RA, lupus, and arthralgia. The pain is unbearable at times. Then I go through my boils breakout(s), which sometimes take a month to resolve. I get cortisone shots in my feet and my big toe(s), and frankly, I am getting tired.

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