What is life expectancy with life scleroderma?

1 answer | Last updated: Nov 01, 2016
A fellow caregiver asked...

My partner was diagnosed 10 years ago with lung scleroderma and stage 3 rheumatoid arthritis. She now has secondary pulmonary hypertension. She walks alot, uses her oxygen and is a non smoker. She has more shortness of breath and is more fatigued. No leg swelling. She is a retired ER nurse and thinks her life expectancy has now been reduced to 2-5 years. What do you think? Her doctors are not sure what to think anymore as she has outlived what they thought she would.

Community Answers

Andersen answered...

For what it's worth, I have a friend (male, age 75) who was diagnosed with RA and Lymphodema (sp?) about 5 years ago. The meds he was taking at that time were making him very sick. He stopped seeing his physician and stopped taking his medications. He was initially wheel-chair bound, yet had no outside assistance from caregivers, for example. Little by little, he gained strength (note: he was/is not taking any medication other than one aspirin a day) and he refused to give up. After using a cane for a short time, he began walking on his own, starting out slowly and gradually extending distances. He walked daily, save other commitments, even when in pain. He makes his own meals, and all are made with organic foods; he has a very balanced diet. He lost about 60 lbs. within a couple of years; he was about 210 lbs. to begin with and 6'3" tall. With age, he shrunk a bit and is now at 6' or so. He began taking up stunt kite flying and participates regularly in this sport. His kites are up to 7' long, and often it is a struggle to combat high winds; but he considers it a challenge and finds much enjoyment with his hobby. He purchased a recumbent(sp?) bicycle recently, and rides almost daily between one-three hours/day. Physically, his feet swell often and are somewhat deformed, and he has trouble walking when he first gets up in the morning and is sore/achey after exercising. He uses a machine every night methodically for one hour, which compresses his legs while elevated. He gave up smoking and drinking years ago. He is an incredible example of how one can turn his/her life around, even with a terminal illness. He believes he has greatly reduced his RA symptoms and hopes to live well beyond the statistics for RA. Note well: I am not suggesting or supporting here that RA patients should stop seeing their physicians; I also do not endorse giving up one's medications. What my friend has done for himself is rather extreme; but fortunately, it worked for him. You may wish to consider an organic diet and just continuing with your exercises. Best wishes to you and yours.