Limited Scleroderma or CREST Syndrome: What helps?

I have limited systemic sclerosis. New terminology for CREST. I was just contacted by a research tech from Mayo in Rochester to participate in a GI study related to scleroderma. If you go on the Mayo Clinic .org site under clinical trials. I am really glad to be doing this. Not that I will learn anything new about my illness. Unless there is something significant they report back to me. But because there is so little information and research out there related to scleroderma. Hopefully it will help the next person.

@mshutch I think joining a clinical trial is great!! Thank you! It may not help you but it will help someone, someday

I really didn't know where else to go. I'm 25 and was just told I have Scleroderma/ CREST syndrome. I've been doing so much reading and research, only on medical websites, of course, but I'm so scared what this could mean for me.

@babydemonfangs, welcome. I can imagine you're frightened. Getting a new diagnosis, especially in your 20s is scary. I moved your post to this existing discussion:
– Limited Scleroderma or CREST Syndrome: What helps? https://connect.mayoclinic.org/discussion/crest-syndrome/

I did this so you can read previous posts and connect easily with fellow members like @shasmith @mshutch @moselurl @paulinechavez1 @marye2 @veegee @dxcrestsyndrome2020 who have been where you are today - searching for trusted information, learn as much as possible and learn to live with the diagnosis.

As we wait for others to chime in, I think you might like seeing this video with Dr. Leroy Griffing, Mayo Clinic expert, teaching about scleroderma. https://connect.mayoclinic.org/event/video-qa-about-scleroderma/

What treatment is being suggested for you?

I was diagnosed with Scleraderma at the same time as MCTD in 1996. However, after the initial few years, the tight, puffy fingers and much of the Raynauds ended. I was on Methotrexate from about 1998 - 2014, but a fairly low dose. This video was immensely reassuring, and seems to reflect what is happening for me. Lung nodules did appear last year, but not at all sure that Scleraderma was causal. For reflux and swallowing issues, hot tea, small meals and the information on webmd seems to help. I am also on Pantoprozole. https://www.webmd.com/heartburn-gerd/triggers

I have had limited scleraderma since 2001
A Good Rheumatologist is essential for your continued care of this disease. I went thru a few rheumatologistsbefore I felt comfortable. All of my drs are women, except 1. And they are all aware that I am the one in control of my disease.

I have had limited scleraderma for 21 years and I was lucky enough to find excellent drs to take care of Mr. I call them my team the 2 most important drs are Internal Medicine and Rheumatologist. I have a Pain Dr., eye Dr and Gi Dr. Because alot of my symptokms involve my esophagus and stomach. And all of them are women except for my pain Dr. They all believe me and I stopped the hypochondriac game I used to play with myself. I stopped doubting myself. It all makes a huge difference in my life to take control of my disease and have my team help me do that.

If I can help in anyway, I would love to discuss with you about Crest syndrome. Have had it for 22 years and if you have any questions please do not hesitate to reach out to me.

ANA positive. Centromere 1:2560.
Centromere B >8
No skin tightening.
Symptoms: fatigue, brain fog, joint pain /swelling (due to osteoarthritis), bloating/gas, shortness of breathe (lung X ray is fine), cold hands and feet but not blue

Rheumatologist told me I have autoimmune disease but he cannot diagnose a specific disease apart from osteoarthritis, since I don't have obvious CREST symptoms. He put me on low dose of hydroxychloroquine (200mg daily) and said to check every 6 months. I have been on hydroxychloroquine for 9 months and Centromere has worsened from 1:320 to now 1:2560. I feel pretty much the same and has learnt to live with the symptoms. Rheumatologist doesn't think I should be alarmed and think that my condition is "stable".

Should I seek second opinion or just wait and see if things worsen with time?

I am 56 and not very active due to osteoarthritis pain in fingers, hip and knees. Any thoughts based on your experience with CREST? Thanks.

BTW, I also have chronic hives for over 7 years. It is finally under control last year under a new Allergist.