Might have scleroderma and need some advice

4 posts in this topic

Hi everyone.


I've just been informed that my scl-70 is +5.6, which may indicate scleroderma.


I have several other autoimmune diseases...first, I've had Raynaud's since I was a teenager (I'm 41 years old now). Secondly, I have transverse myletis (pre-cursor to MS) and thirdly, I have autoimmune hives. I've had hives since 2010. They are the bane of my existence.


My question is, does anyone else with scleroderma have autoimmune hives? Are they related somehow? I get several types of hives...sometimes just red streaks and other times, actual papules that raise up like a chicken pock. I also have a scaley patch of skin on my neck that comes and this scleroderma?


I can't lie, I am freaking out! I don't know why my immune system continues to attack me in every which way it can. Very scary. I can't get in to see a rheumatologist until mid January, so I'm left here to fret and worry until then....any information or advice would be appreciated.


Beth in Pennsylvania

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Hi Beth,


Welcome to these forums!


I'm sorry to hear that you've suffering with several autoimmune diseases, one of which is hives (Urticaria.) I've included a link to our medical pages with more information on Urticaria which I hope will help you and also a link to a previous thread on the same subject which I hope you'll find interesting.

Please note that I have no actual medical training, apart from a now out of date first aid certificate but it is my understanding that hives are not considered to be a symptom of scleroderma, in that they do not add to any diagnosis for scleroderma, nor are they listed as a symptom of scleroderma. That said, people with scleroderma and other autoimmune conditions (like lupus) are a bit more prone to them than a healthy person, because the immune system is already compromised.


Unfortunately, Scleroderma is a very difficult disease to diagnose which is why we do recommend that if possible you consult a Scleroderma specialist. Certainly, although the results of blood tests are taken into account, the clinical symptoms are very important as well, as it is perfectly possible to have positive blood test results for Scleroderma and yet never go on to develop the full blown disease and vice versa as many of our members can testify.


I do hope that when you are able to attend your rheumatologist's appointment, he will be able to help and advice you.


Kind regards,

Jo Frowde

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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Hello Beth


Welcome and I echo Jo, hives is not a symptom of scleroderma and blood work positive for scleroderma does not mean you have the disease, just the antibody. Anyways, if you already have a bunch of autoimmune diseases and did have scleroderma you would not get the full disease but just a sample of it.


Please let us know what your rheumatologist says and keep posting.


Take care.

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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Hello Beth,


Welcome to Sclero Forums!  I'm sorry you have health issues and concerns about scleroderma.  I also have absolutely no medical training at all, however I concur with Jo and Amanda that hives are not a symptom of any form of scleroderma.  They are not part of the diagnostic criteria, either.


Oddly enough, although it is very rare, transverse myletis can occur in systemic sclerosis; it is not always or only associated with multiple sclerosis. If you're not suffering any major new symptoms right now, you should be just fine until January. Even if you have scleroderma, it is most often very slow in developing. And if you do have any new symptoms between now and then, just see your primary care doctor. You do not need to go without treatment, and the usual approach is to just treat the symptoms of scleroderma as they arise, anyway.


It's always possible for the antibodies to end up amounting to nothing at all.  They might evaporate on your next test. They might have been a lab error.  Most of us old timer's will tell you it is wasted energy to worry about antibody tests.  The antibodies don't actually DO anything, they just sometimes give the doctor an idea of what might be going on.  The real question would be, why did your doctor run the antibody panel in the first place?  It is those symptoms that inspired the test that are the most telling, from a diagnosis standpoint.


See how things go with the rheumatologist and then decide if you need to see a scleroderma expert, or not. Meanwhile you have us, and I hope that just allaying the concern over the hives might make this holiday season a little brighter for you, while you await more info.



Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is

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