Patient Comments: Connective Tissue Disease - Treatments

Question:What was your connective tissue disease treatment?

Comment from: Arkansas Girl, 35-44 Female (Patient) Published: November 18

I currently have dermatomyositis and psoriatic arthritis. I take Imuran and methotrexate. I have great difficulty with the high dose of methotrexate I am on. It causes nausea, migraine and a general 'yuck' feeling, like having the flu. My newest rheumatologist suggested that since my dose is high, we treat me like they do the cancer patients that have to take methotrexate in high doses and give me the rescue drug, leucovorin. I tried it and it works amazingly well. There are no nasty side effects.

Comment from: Ccjinc, 45-54 Female (Patient) Published: May 23

I have been diagnosed with Sjogren's syndrome and fibromyalgia and arthritis, bursitis, tendonitis, and tennis elbow. I also have adhesive arachnoiditis after 5 back surgeries. Finally my rheumatologist told me today that I have connective tissue disease. He is starting me on Plaquenil. I hope it works!

Comment from: living again, 55-64 Female (Patient) Published: June 07

With undifferentiated connective tissue disease, I had excruciating pain for more than a year. Joint and muscle pain, lung pain, numbness in fingers and toes, almost lost a finger, fluid in the lungs - I can't even remember all of the symptoms. It took a long time to be diagnosed correctly, but I have finally found relief from a mix of drugs - Cellcept, prednizone, and plaquenil as well as gabapentin for nerve pain and helps me sleep. I cannot urge readers enough to push to find the right mix of drugs to get your symptoms under control and relieve the pain. It's been 2.5 years, but I'm starting to feel like a normal person again. And also the message to relax, accept the illness, learn to enjoy what you can, give thanks, and look for the good in yourself and others is great coping advice. Please! don't suffer out there! Oh, I have more! Garlic and exercise can both stimulate your immune system, so be very careful about both. I now go to the gym, but I don't push it and work on improving very slowly.

Comment from: StillAlive, 35-44 Female (Patient) Published: May 06

I was diagnosed with 11 issues within a two-year period. Most of my issues fall under hypertoxicity syndrome. Steroids are a big no-no for someone like me, as it blows everything up all at once. I almost died twice. What worked for me was doxycycline and Plaquenil. I am not on medication right now. My diagnoses are, brain tumor, lupus, connective tissue disease, Raynaud's, fibromyalgia, hypertoxicity, eight TIAs, petit mal seizures, scoliosis, RA in my spine, Buerger's disease, and degenerative disc disease. I am 44 now, and my body always feels like Jell-O. Garlic and thyme have been life savers to me. I use essential oils and other natural remedies – too many to list.

Comment from: Okie, 65-74 Female (Patient) Published: December 10

Advice for Plaquenil patient. I've had inflammatory arthritis for over 40 years. The Plaquenil isn't a cure, and it took three years to gain remission with it the first time, but I managed with it until recently. I'm now beginning Azathioprine (Imuran). My advice to my younger sisters is to hang in there with the least damaging treatment you can live with for as long as you can. Learn to relax, your pain will be much milder and easier to live with. Give up being mad about your situation and learn to love your less than perfect self. Give yourself the TLC you deserve and don't let a day go by without counting your blessings. These survival tactics work. Go softly.

Comment from: MiffyGirl, 35-44 Female (Patient) Published: September 26

After my husband suffered a brain aneurysm they discovered another aneurysm hanging from the arch of his aorta and he underwent open heart surgery 6 weeks after his brain surgery. We were told he has a connective tissue disorder with collagen deficiency. He has always had psoriasis and rheumatoid arthritis. So now we understand what is going on inside his body as well as outside. His blood vessels and tissues are very thin and weak and he can suffer from brain and other bleeds with the slightest jolt to his body. I would urge anyone diagnosed with a connective tissue disorder to be checked out for possible internal issues, such as aneurysms.

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Connective Tissue Disease - Diagnosis Question: How was your connective tissue disease diagnosed?
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Connective Tissue Disease - Signs and Symptoms Question: What were the signs or symptoms associated with a connective tissue disease in you or a relative?

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