Scleroderma Remission?

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

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  • Dear Natasha,

    It sounds like you are going to be ok. I had a very aggressive onset ca 1994, followed by 5 yrs immunosuppression. No Scl 70, only anti RNA, Ro and La. DLCO stable 63%, lung and esophagus involvement. I had double vision for a while, stayed in bed for months, a few severe vasospasmatic attacks with my legs exploding from pain. This is all history. I am well, swim an hour every day, living in Spain (11 yrs now) did wonders to my Raynauds. You will be doing very well I am sure! The only thing getting worse is my face: telangestasia all over.. loss of tissue deformations, microstomia. The picture is from 2008, I think I look worse now.

    Best wishes

    G.

  • G, you live in Spain!!?? Lucky you! It sounds like you will do very well too. Staying active and it seems you are staying positive. Can I ask, did you ever change your diet? is there anything you can attribute to doing well now? I am just curious. I wish I could live in Europe!!! Thank you for being positive about my situation. It makes all the difference. There are some on these boards who are very negative...and that brings me down.

  • Oops meant I do not eat gluten, sugar, no dairy etc.

  • Hi Natasha,

    I guess I was your age when I fell ill, (*1975?? me *1955) in the middle of my PhD, with 2 young children and a travelling husband. I had moved from Germany back to England, didn't know a soul where I lived. Initially I attributed my back pains to having moved the freezer with my back! I knew of 2 other women a bit younger than me who started the same treatment (cyclophosphamide) at the same time and died, so I was really not hoping to survive. My condition was so bad that I had to drag myself upstairs on my elbows. It took a year to cure the leg ulcer. I had no tricks up my sleeve and I was not fighting. I cried a lot but never fell into depression.

    I think it was only my mind that kept me going, I read and cried and read and cried. Read lots of medical literature on SSc .

    Well it is all over now, I have been really doing well, never even think of that horrible sc... word, unless I want to cheer up a fellow sufferer!

    I never worried about my diet, always ate plenty of diary products, no red meat, kept a stable weight. It took me some 7-8 yrs to get my weight back after 5 yrs of steroids. Wore a wig for ca. 2 years. Looking back I think the only thing that would have helped me would be people. I was alone, no family nearby, knew nobody around, my husband flew to Switzerland every Sun and came to London every Fri. He did the weekly shopping and took care of our children *1982 *1985. My sister came from South Africa to visit me and didn't recognise me at the airport.. she just passed by. I really had some rough patches.

    Spain sorted out my Raynauds, that is why we moved here to Moraira, half way between Alicante and Valencia. Even now, close to Christmas we have ca.20C and 12C at night. My hands are never cold.

    I very much want to convince you that even after such a terrible course of sc.. and a very aggressive onset the prospects of remission are good, and probably better now than 20 yrs ago. We are very lucky not to have Scl 70. Do not despair, even if you happen to feel weak and lifeless, it really goes away. I could not even keep my head upright for a couple of hours every day for about a year. Today I did 10 hrs of gardening, carrying loads of compost bags 80l each, planting 50 pansies for the winter months, pruning, sweeping, raking, bringing heavy agave leaves to the green containers. Now I am still fit to continue my Coursera online course in Genetics. I do not really have any BAD DAYS anymore, so remission is REAL and in 20 years time you will be saying these words to someone born in 1995.

    Where do you live? Do you have cold winters?

    Wishing all the best

    a very warm hug

    Grace

  • Grace! Thank you for being so positive!! there are many who are negative on these boards and I, too, am a very positive person and believe I will overcome this and actually heal. My raynauds is hardly existent to be honest. We have very cold winters and I still run outside through sub 20 degrees Fahrenheit and I am not bothered by the cold. I also do not have any skin manifestations of the disease, which my doctor said is very rare considering I have an arrhythmia which they attribute to it. I am set to see a specialist next week which I am actually looking forward to because he will have a better idea than my normal doctor.

    I am so glad you are doing well! that is so so wonderful to hear. Yes I believe that remission is real too, however there are those who are very negative who do not believe. I am reading that the first years are the most aggressive than many times it burns itself out. I wonder why? and also wonder if it can be attributed to something, i.e. in food, in environment etc.

    Did you test positive for any antibodies? what pattern was your ANA? and what was the number? I am just interested and hope you do not mind the more personal questions.

    I am still single and having this does not making dating easy.

    I would love to stay in touch with you. I will try to send you a private message with my personal e-mail. I like to surround myself with positive people not negative ones.

    Natasha

  • This thread makes good reading. Liking the positive vibes. Do you still run, Natasha? I was feeling inspired this weekend. I was staying in a hotel on the route of a half marathon I did pre diagnosis and have sent for running tights, mittens, top etc. I'm not sore at the minute and, apart from the occasional bought of fatigue, I'm in good nick. (OK, I'm fat and out of condition but I want to fix that!)

    I love the heat but have an overlap with Lupus and strong UV light seems to trigger some of my other symptoms. I was loving the heat in Cambridge this summer (visited for a few days) and flared when I came home.

    Apart from reflux and raynauds I have no lung involvement and my last ECG was normal. I have no signs of inflammation and feel like I have been given a reprieve. I really should take advantage of my good fortune.

  • You should DEFINITELY get those running shoes into use again! Yes I run regularly about 4 to 5 mike 4 to 5 days a week. I also walk my dog 3 to 5 miles a day. I am on beta blockers so they keep my pace about a minute per mile slower than when I had heart issues 2 years ago but running keeps me feeling positive mentally and physically in shape and strong. Get that bootie moving, it will help you in more ways than 1. You are lucky you do not have heart issues. Thats my only issue from 2 years ago. I have conduction abnormalities so abnormal ekg but normal mri and echocardiogram. Maybe my ekg will normalize, who knows. I feel great though and feel normal!

    I am a positive person by nature, beung very active helps me stay strong.

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