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creleon

Raynaud's with injuries

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Hello everyone,

 

I made a post a few days ago about my little sister getting Raynaud's and ANA positive 1:2560 (are there healthy peoples with that high of a titer?) with no other symptoms and Raynaud's Phenomenon running in our family.

 

My doctor talked about scleroderma but was not that worried and no appointment to any rheumatologist was planned, which is bothering me. I tried to do what very lovely peoples told me here, to keep calm and all, so thanks for your help. 

 

I was just wondering if little injuries on toes usually appear with Raynaud's Phenomenon?  Also, her toes never appear to go back to normal. Her little cuts aren't painful at all.A new appointment is planned in 3 months.

 

Also, I read that Raynaud's diagnosed at that early age is way more likely to be primary, is that true?

 

Thanks for your help. Have a great day.

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Hi Creleon,

 

As we discussed before, the results of your sister's blood tests are only an indication of any possible problems she may have. The advice you received from her doctor is very much par for the course, as many doctors and rheumatologists adopt a "wait and see" policy, mainly because until further symptoms manifest themselves, it's impossible for them to predict how things will develop, even supposing that they do. Your sister may never have any further problems.

 

Small injuries on toes are not necessarily a symptom of Raynaud's. Digital ulcers can certainly form and can be a complication of Raynaud's, but they are much more serious and should always be treated by a doctor and not by home made remedies. However, to put this into context, I have had Raynaud's for years and have never had the slightest suspicion of an ulcer (thankfully)! Also primary Raynaud's can be diagnosed at any age (again, I initially thought that was what I was suffering from, it was only when other symptoms manifested themselves that we realised that there were more complications.)

 

As your sister has a doctors' appointment in three months, I would certainly make a comprehensive list of the things you want to discuss with him, but if you are still very worried, then I would advise you to go back to your sister's doctor before then and talk through your concerns with him.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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Hi Creleon,

 

Here's an article that may help a bit: When do Raynaud symptoms merit a workup for autoimmune rheumatic disease? by Cleveland Clinic Journal of Medicine. 

 

It's rather odd that you say her toes never go back to normal.  In Raynaud's, there is a return to normal as soon as the attack is over.  If that's not happening, she may have acrocyanosis.  Acrocyanosis sounds horrible, but it's a benign (harmless) condition caused by poor circulation. 

 

It's impossible to tell, of course, whether you are referring to some sort of injuries or to skin ulcers on her toes. Injuries, of course, would not be related to the Raynaud's, but any sort of circulation problem would make healing slower. 

 

I can't quite tell what you are referring to, when you say that your doctor talked to you about scleroderma.  Was this in the context of concern for yourself, your own symptoms, that cause you to be worried about scleroderma?  Or was your doctor referring to your sister potentially having scleroderma, due to Raynaud's and positive ANA?  Or, you're worried about having scleroderma because your sister might have it?  Whatever it is, let us know, and we'll try to answer more precisely. 

 

:hug-group:


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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Hi, thanks for your responses Joelf and Shelley.

 

Yes, it's odd because her toes have been purple with orange patches all the time for the past few months without any changes. I checked acrocyanosis on the internet; I'm not too sure what to think but it could be possible as my mother had varicose veins and poor legs circulation.

 

My Doctor talked about scleroderma for my sister while explaining the blood test results to us (+ANA and Raynaud's) but I learn as you told me there are a lot of other autoimmune problems. I'm worried about the number of ANA in her blood, it's quite scary! I hope it's not related to the severity of the disease or the existence of a potential disease.

 

Thanks, have a good day.

 

Sorry, I forgot to mention that her blood test shows no sign of any inflammation.

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Hi Creleon,

 

You'll probably be quite happy to learn that, to the best of my knowledge (although I am not a doctor and have no medical training at all), scleroderma doesn't cause orange patches; or skin that is purple and orange all the time.  The color changes of a Raynaud's attack are temporary, often as little as a few minutes from attack to rewarming, and usually inspired by an identifiable source, such as exposure to temperature changes or extremes, or due to anxiety, or chemicals such as caffeine, nicotine, or other vasoconstrictors.  And, I've just never heard of an attack of Raynaud's described as also including patches of orange skin.  Red, blue, white, purple -- YES.  But orange?  No. At least, not for me, that's for sure. 

 

The thing with orangeness is that it usually indicates that iron has leaked into the skin, somehow, like with Schamberg disease.  Is that a little closer to describing what your sister has? 

 

Another article you might like is, Antibody test ‘inappropriate’ without connective tissue symptoms.  It says, "The study showed that over 90% of patients referred to a rheumatology clinic following a positive ANA test had no evidence of ANA-associated rheumatic disease."  About 15% of people with high positive ANA turn out to be completely healthy; and 35% of seniors have positive ANA.  

 

Which of course, raises the question, what else can cause high positive ANA?  Positive ANAs can be caused by:  medications, old age, genetics, any type of infection, alcoholism, cancer; lung, blood, gastrointestinal and skin diseases.  So it becomes important to look at every possible cause (not just connective tissue diseases), and if everything is safely ruled out, then it may come down to a simple family history of rheumatic diseases (genetics). 

 

Another way of looking at that is that only around 10% of people with a positive ANA actually have a connective tissue disease. And, a high ANA titre is not indicative of disease or disease ferocity, except in very limited circumstances; it is the other blood tests and associated symptoms that really and truly matter.  It's sort of like, positive ANA is not helpful in a vacuum of certain other symptoms or lab tests; it is only helpful when it is considered in light of them.

 

ANA doesn't "cause" illness any more than a parked race car can "cause" death.  So far, what you have is a parked race car, which may or may not be related to the skin color changes. 

 

It's all quite curious, of course.  The ANA in this case might serve as a significant clue, or as a detour. That's why the focus keeps getting put back on the symptoms, despite how badly all we want is answers, fast and straight answers, from the blood tests. It's in the uncertainty that feeds our anxiety, and really, none of us can be blamed for wanting answers . . . fast and and accurate answers!

 

:hug-group:


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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Thank you so much for your reply,

 

I'm so happy to have found you because you're are way more helpful than any doctors I met and way more comforting, so thank you very much to show that much care to a stranger. I don't think it's the disease you referred to but it could be possible that it's not Raynaud's then.

 

As for the antibodies, thank you for your explanation, I'm reassured now; I thought it was much more indicative of scleroderma or other diseases. I feel bad for just responding with three lines, but you really answered my questions .

 

Thank you very much.

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