Scleroderma Remission? Is it possible to do well?

[Natasha1975]

I am reading that many times the first 3-5 years are the most aggressive with Systemic Scleroderma. And that many times the disease "burns itself out" or goes into remission. Anyone experience this? Would love to hear positive stories. I have no skin involvement, an arrhythmia from two years ago for which I was implanted with an ICD and placed on beta blockers. I have immotility of my lower esophagus but I am not symptomatic - never had problems with it but I was just tested. I have normal lungs. Very slight raynauds but not much. I have a positive ANA 1.680 nucleolar pattern. Tested negative for SCL 70 and anti centromere antibodies and I am still waiting on the RNA Polymerase results. I am hopeful because I feel great. I do eat gluten, dairy, sugar, no alcohol and I exercise regularly, stay stress free and get rest. I am staying hopeful...would love to hear stories of remission and hope.

Thx.

Natasha

[zenabb]

I would not call it remission. It is certainly cyclical, comes and improves in cycles.

[Natasha1975 in reply to zenabb]

So if it is cyclical, I wonder if people were more in tune to causes, i.e. what they eat or do, that they can keep it at bay?

[zenabb in reply to Natasha1975]

Yes, I am sure that we take the precautions we can and gain experience as we go along.

[Noni1]

I was diagnosed with Crest 10 years ago and have to say am mostly healthy with some flare ups of Raynauds but I do get very tired. I can go for months with nothing then the fatigue catches up with me. Annual checkup next week so I keep my fingers crossed.

Best of luck

[Natasha1975]

Non1, that is great news!! Do you have any internal damage? are you being treated at all? did you make any significant changes to your life (i.e. eating) when you were diagnosed that you can attribute to your remission? I am just wondering...thank you!!

[Yorky]

Hello, sorry, I have never had a remission. I have had raynauds for 50 years, with Scleroderma being diagnosed 30 years ago. During this time I have had a VERY SLOW increase in problems. I now have severe raynauds, swallowing, gut, bowel, sjorgens, lung problems etc etc. But still manage a fairly normal life, anyone first meeting me would think I was fit and healthy, I am very slim. At times it seems like just like one thing after another, but I manage to cope/deal with each little setback, I think it helps to keep a positive attitude, I see many people much worse than me. Best of luck in dealing with everything.