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Update, could do with some help

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Hi guys, not posted for a while.


I could do with some support..... A general update since I last posted is this: Scleroderma stable, but other developments.


I have had punctual plugs put in my eyes - very dry, plus a big toes fusion due to osteoarthritis. I have been told I am also gastric parietal cell antibody positive (pernicious anemia) so along with this I am also ANA positive, ACA positive, AMA positive, antimicrosomal positive and have low C4 (Confusing, thought C4 was associated with lupus)


Due to the gastric parietal antibody, and being a vegan (no B12 in diet) I had further blood tests, my B12 and folate are very elevated, and as I take 80mgs omeprazole for reflux (which helps block absorption of B12) I am very confused  :emoticon-dont-know:

Furthermore, on return from work tonight, my ankles were massive! I have also noticed that as I have caught the sun(!!!) a little, I have lots of small white dots of hypo pigmentation everywhere.


Suggestions/comments appreciated!



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Hello Lisa


Swelling (edema) is common in scleroderma and can go on for weeks, months or years and it can come and go. The best thing for swelling is elevation and making sure your salt intake is appropriate as excess salt makes edema worse.


People with scleroderma need to be careful with their sun exposure (on some immunosuppressants it's a total no-no) . Here's from our newsroom:

Sunlight and vitamin D for bone health and prevention of autoimmune diseases, cancers, and cardiovascular disease. Sensible sun exposure (usually 5-10 min of exposure of the arms and legs or the hands, arms, and face, 2 or 3 times per week) and increased dietary and supplemental vitamin D intakes are reasonable approaches to guarantee vitamin D sufficiency. PubMed. Am J Clin Nutr. 2004 Dec;80(6):1678S-88S. (Also see: Causes of Scleroderma: Vitamin D Deficiency)

The abstract says, Although chronic excessive exposure to sunlight increases the risk of nonmelanoma skin cancer, the avoidance of all direct sun exposure increases the risk of vitamin D deficiency, which can have serious consequences.


As for the pernicious anemia issue you are going to have to see your doctor, clearly getting sufficient Vitamin B12 into you is going to be problematic! You may have to change the time you take your omeprazole as well so it does not interfere with any medication you're given and I assume you'll be given medication?


Take care and let us know what treatment you're given and how you respond.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Lisa,


It's great to hear from you again, although I'm sorry that it's because you've had some more worrying blood tests and health problems.


Amanda's given you lots of advice; I would just add that blood test results, although useful to help with a diagnosis, are by no means conclusive. Just to give you an example, I have Anti-Pm/Scl antibodies and yet thankfully don't appear to have developed Polymyositis and I know many of our members have positive antibodies without developing the full blown disease and vice versa.


Do please keep posting and let us know how your treatment progresses.


Kind regards,

Jo Frowde

ISN Board Member

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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