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Hi! I am new to this forum, but I was wondering if anyone here who has Scleroderma also has had Urticaria of any sort? Urticaria is breaking out in hives or a rash. Mine happens when exposed to cold, such as grocery shopping in the cold section, a/c in car blowing on me more than a minute or so and making my skin cold, etc.... I don't develop the hives, but I do get a flat, red and white rash. My "ice cube test" came back positive for Cold Urticaria also.


I developed Cold Urticaria March 15th, 2012 and while it may be totally unrelated, I also got a positive ANA of 1:320 with a nucleolar pattern, but a negative SCl-70, and also a negative Lupus, Sjogren's, etc.... just a month or so after that.


While I know a diagnosis doesn't rely solely on labs, all my bloodwork was normal except ANA (first ANA was 1:80 and nucleolar, and 6 months later my ANA was 1:320 and nucleolar)and my C3C was kind of high at 239 (normal range is 90-180). It is my understanding that the C3C measures inflammation in the body.


I would appreciate any info anyone has on a Scleroderma/Cold Urticaria relation. Thanks!

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Hi ItchyLittleTexans,


Welcome to these forums!


I'm sorry to hear that you've suffering with Urticaria. I've included another 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 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.


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. I've also included a link to an abstract of an article on Generation of a C3c specific monoclonal antibody and assessment of C3c as a putative inflammatory marker derived from complement factor C3. which explains more about markers of systemic inflammation.


I'm very pleased that you've found our forums and joined our community and I'm looking forward to reading more of your posts.


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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Hi Itchy!


I used to get what I called "heat hives" all the time. It happened when I went from a cold place to a warm/hot place, particularly on my hands or feet, and they'd get terribly itchy and red and puffy. So I don't know if that's urticaria or not. But I got them ever since I was a kid, and the funny thing is that even though I have Raynaud's with my scleroderma, I haven't noticed the heat hives for awhile.

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Hi Itchy,


I'm sorry that you have cold urticaria. I know how difficult it is to live with because one of my family members had cold urticaria. The only good thing about cold urticaria is that it usually goes away within five years, or even sooner if the cause can be identified and dealt with. Cold urticaria can be caused by many things, including allergies, viruses, autoimmune conditions, etc. My relative improved a lot after going on an allergy-elimination diet and eventually it went away entirely, because inflammation can be caused by many things, including allergies or sensitivities.


The other good news is that, without any other symptoms, you wouldn't be in danger of being diagnosed with scleroderma or any other autoimmune disease, as they all require a certain number or set of clinical symptoms for diagnosis. It is possible (and even fairly common) to have antibodies without ever developing the associated autoimmune diseases for them.


That said, as I understand it, it is a good idea for anyone who has tested positive for antibodies to have annual physicals, even if they feel fine, and to consult a doctor if any new symptoms arise. This way, any possible underlying cause could be caught very early on -- plus it gives you priceless peace of mind, too! So, if your doctors give you the "all clear" after this round, simply stay on track with any follow-up program they recommend.


And if they don't recommend anything at all, go with the baseline annual physical plan, just to be on the very safe side of things.

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 sclero.org.

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