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chockers

How do you know if you have Crest?

9 posts in this topic

Hi Folks.

 

I have scleroderma overlap with Rheumatoid Arthritis. I am well controlled.

 

I got a copy of my bloods for insurance reasons and to fly out and I see on there they are testing me for CREST though I've not been told yet. Guess they might be still testing me?

 

I have Raynaud's, Calcinosis, little red spots, heart burn, tight skin on face and scalp, Irritable Bowel Syndrome as well as the R.A. (very little joint damage.)

 

So how do you know you have it ?

 

I guess I might have.

 

Christine.

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Hi Chockers

 

We do have a link here regarding CREST aka Limited Sclero which I hope you will find informative but the best idea is to consult a Scleroderma specialist, if you haven't already done so. They are in the best position to advise you as sadly many rheumatologists do not have the expertise to deal with this very complex disease.

 

Do post again and let us know how you get on.


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 chockers,

 

Joelf posted a great link for you to peruse.

I actually have the "REST" of CREST, in that I have all but the Calcinosis, with my symptoms.

Raynauds is the R; Esosophageal Reflux Disease is the E; Sclerydactyly is the S, and Tangelasia is the T.

 

So, your doctors sound very proficient and I'm glad you have them on your team!

Keep us posted and thank you for your post! :)


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Well I have faith in my rheumatologist as he once worked at the Royal Free in London and has seen a lot of Scleroderma.

I would have good care if I needed it ....

 

I am lucky to have him even if I don't know what type of Scleroderma. I know why, it's because when I went to get diagnosis for the R.A I took a list. I had started to get white fingers and remembered to tell them most things. Then I had a blood test, the new type of blood tests which pick up everything plus Scleroderma. So then I hardly knew I had it .

 

Four years on you can see I have scleroderma slightly .Things now have moved on a bit. They have been testing me for this and that

with the dermatologlist and rheumatologist together. So likely that's why I found tests had been sent on to the other hospital for testing on the blood form so I guess I have Crest. Will ask next time.

 

I was letting them tell me as I guess they will test me a few times to make sure? I have the signs I have it.

 

love Christine

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Hello Christine

 

CREST stands for Calcinosis, Raynaud's, Eosophageal problems, Sclerodactyly and Telangiectasia. From what you have said it sounds like you have the C,R,E and T of CREST aka limited scleroderma. The diffuse form of the disease is very fast moving whereas the limited form can progress more slowly, either way both are systemic forms of the disease.

 

Take care and keep posting.


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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They say I don't have it, ha ha. Well now they do. I have scleroderma mild R.A MILD and overlaps mild. But I don't care I am alive. christine :emoticons-group-hug: :emoticons-line-dance:

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Hi folks

 

Well my nurse says I don't have crest and my rheumatologist says there's no such thing as crest or limited, he worked at Royal Free, so what ever I have he will be an expert as he would had seen it.

 

Today I had to ring the Raynaud's and Scleroderma people because (sorry no-one answered) my calcinosis popped - it grew over night and started to pop out of the skin, with a load of liquid calcium (white stuff). The Raynaud's and Scleroderma lady (Ann) had just done a survey on them and knew what to tell me to do. I ordered some antibiotic cream from the chemist (forgot the name) and I am keeping it dry and covered.

 

It was the biggest the nurse had ever seen, I went to the connective tissue nurse on Friday. Today I rang our help line but the nurse (mainley R.A.) rang back - go to doctors. That would had been totally useless as it just looks like a scab or a hole, but I can see the core inside. And doctors just don't know they have never seen them. So I have my finger covered but its comfy as using the right stuff.

 

Anyway that's me today.

 

ha ha ha ha

 

Christine

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Hi Christine,

 

I'm glad your lump popped OK. That makes it hurt less, right? Sounds like you are doing all the right things for the spot where it was, no use getting an infection! Now here's hoping that you don't ever have another one and whatever they want to call the disease variety you have, that it takes it easy on you.

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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