Patient Comments: Connective Tissue Disease - Treatments

Question:What was your connective tissue disease treatment?

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.

Comment from: Catie, 45-54 Female (Patient) Published: August 17

I am new to this connective tissue disease. I have been put on Plaquenil twice a day and Mobic one time a day. I am understanding this Plaquenil can cause you to go blind after a period of time. All I know is the pain is excruciating at times and I am very lethargic and hurt constantly.

Comment from: Gypsy, 45-54 Female (Patient) Published: May 24

I have been told I have a connective tissue disease. I have stabbing pains in my feet, hands and arms, I also have leg cramps, I am on the strongest Anti-inflammatory there is, stomach tablets, epilepsy tablets all only help for a short time, I have had enough, I only sleep around 4 hours. I would like to try over active thyroid tablets but the Doctors aren't sure what to do.

Comment from: ksweetirishrose , 65-74 Female (Patient) Published: May 02

I have undifferentiated connective tissue disease (UCTD). I have been told to use Vicks VapoRub on my cuticles for dry cuticles and Restasis four times a day for dry eyes. My biggest ailment is swollen parotid glands, for which I take Pilocarpine. I do hope this is all I get.

Comment from: penny123, 45-54 Female (Patient) Published: January 20

I was told by my Dr. I have a connective tissue disorder. This was 6 months ago. Since then I have been put on Relafin 3 x day and plaqamil 2 a day. In these 6 months I have had 3 flare ups. During which they are very painful so the Dr. put me on steroids to get under control. So far it's in my left wrist and now moving into my right. It's all very new to me and it's scary to think there are so many kinds. I have to take one day at a time.

Comment from: kkm, 45-54 Female (Patient) Published: August 12

I have been diagnosed with sjogren's disease, and have tested positive for Lupus, but they will not diagose me with Lupus until I go for another blood test in three months. Mean while I am so exhausted, my joints are really hurting. This connective tissue disease really is a pain in the butt.

Comment from: kldipietro, 55-64 Male (Caregiver) Published: August 17

My husband has undifferentiated connective tissue disease, his doctor has him on Plaquenil twice a day for the last year. He has improved.

Patient Comments

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Connective Tissue Disease - Diagnosis Question: How was your connective tissue disease diagnosed?
Connective Tissue Disease - Experience Question: Please describe your experience with connective tissue disease.
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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