Patient Comments: Connective Tissue Disease - Treatments


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Comment from: Clint, 45-54 Female (Patient) Published: February 17

I have lived with arrhythmia (ventricular ectopic beats) and sinus bradycardia nearly all my life. I also have exercised keenly and continuously. I now realize (having been desensitized by the experience of life-long arrhythmia) I have been experiencing atrial flutter for many years, often merely triggered by innocuous things like the alarm clock in the morning, sudden unexpected exertion or changes in position, postprandial, and most lately, after strong exercise. Episodes may last 12 plus hours and heart rate at 130 plus and irregular. I take, nor have I ever taken any medication. In fact, I am reluctant to do so. I have recently acceded to an appointment with a cardiologist to determine the basis of the underlying putative conduction problem, chiefly because I am unable to exercise strongly if in atrial flutter and because of the sustained irregular tachycardia post-exercise. I continue to embrace life as fully and vigorously as I have always done.

Comment from: devildog, 45-54 Female (Patient) Published: February 03

I fell Christmas Eve, heard a snap in my upper arm, didn't want to go to hospital, and kept putting off going to general physician (GP). Weeks later the pain made me go to the GP, had x-ray, and was told I had fracture. I went to a fracture clinic and was told it had most probably healed but I have got rotator cuff injury and have to have physiotherapy. Wish I had gone straight away.

Comment from: dawnfliessix, 55-64 Female (Patient) Published: May 23

I am on Plaquenil 400 mg daily 1 caplet in the morning and one in the evening. I have had to see where the problem is and what kind. I was diagnosed with the mixed then last week it was undifferentiated connective tissue disease. Along with constrictive bronchiolitis obliteration. So much is going on.

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: Ruthy, 35-44 Female (Patient) Published: October 15

I was recently diagnosed with undifferentiated connective tissue disease and I am miserable. I am/was a constant on the go girl and part time fitness trainer, I slowly lessened my workouts per week and the amount of exercise I did. For the past year I barely did anything because when I did just a little bit of a workout I was dying of pain for days. I have in the past 6 weeks tried working out with my friends 2 to 3 times per week but I hurt so much and I'm only doing a quarter of what I have them doing and I hurt everywhere. My doctor said she wants to start me on prednisone and Plaquenil. But I'm afraid of prednisone because I blow up like a balloon, I haven't started anything yet and I'm just depressed over this whole thing.

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.


Rheumatoid Arthritis (RA) Symptoms & Treatment See Slideshow
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.


The term arthritis refers to stiffness in the joints. See Answer

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