hdhbch

New Member, I Have Crest

8 posts in this topic

I have CREST symptoms, and my doctor is trying various treatments. I hope they work, as I sure am miserable.

 

Thanks,

 

HDHBCH

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Hi HDHBCH,

 

Welcome to the sclero forums, I'm sure sorry it's due to you dealing with symptoms of CREST. I have CREST as well, so I can certainly understand the ups and downs of it all.

 

You will find a lot of information, support and great friends here - welcome.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Welcome to the forum! You have come to the right place for support. I was diagnosed with CREST in December. I also have Sjogren's and Fibromyalgia. Feel free to email me and ask more questions. Take care and hang in there. I hope that some of the treatments will work for you.

Nan

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Welcome to the forums!

I am glad that you have found ud here but I am sorry that you have been diagnosed with CREST. Here is a detailed page on our sclero.org website about CREST.

We are all here to support and share information. Please keep posting.

Take care,
Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi and welcome to the forums!

 

I am glad you have found us and joined in, but sorry it is because you have CREST. I do hope your doctor finds something that works for you soon!

 

Warm wishes,

Heidi

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Welcome to you!

 

You'll find lots of support here. Let us know how you're feeling. You can be sure somebody can sympathize with you. To me, that was one of the best things about finding this group: I didn't have to explain everything. Since everyone had "it", they already knew and understood what I was talking about! That in itself was such a relief for me.

 

I hope you find it the same for you and that you and the dr. come up with a plan for some relief sooon!!!

 

xoxo emmie

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I am sorry you have Crest. My one bit of advice to you is to make sure you have a competent doctor preferably one that specializes in sclero. If you are with someone who is familiar with CREST then you will have the benefit of he/she knowing what meds work and which may not. I wish you all the best. Gidget.

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Hi HDHBCH,

Welcome to Sclero Forums, I am glad you found us!

Gidget makes an important point. Scleroderma is a very unusual and difficult illness to treat. Most doctors may see only one or two cases of it in their entire career (if that). Thus, odds are very good that they don't know how to manage and treat scleroderma. Some medications that are perfectly okay for other (or even similar) illnesses can backfire with scleroderma patients. (See our recent discussions about prednisone for an example.)

There are a few dozen centers in the U.S. that specialize in scleroderma. The best thing you could do would be to consult a scleroderma expert. They can review your treatment plan and make sure you are on the very best medication(s) for your condition. See Scleroderma Experts.


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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