How do dr dx crest syndrome? What are the real symptoms? I have acid reflux and some times I have dry mouth too.. I take 1 tablet of pentaprazole sodium 40 mg everyday but lately, I'm noticing, I'm burping and frequently regurgitating after eating.. Sometimes I can also feel food is going slow or need water to push it down..is it just bad gerd or symptoms of crest syndrome..
would be nice if I get reply from the person who really has crest syndrome!!
Thank you
Sachin1234,
I found this online. Hope this helps some.
Stella
CREST syndrome can be difficult to diagnose. ... Biopsies can be helpful, but they can't definitively diagnose limited scleroderma either. Additional tests: Along with a blood test and skin biopsy, additional tests to identify lung, heart or gastrointestinal complications may also be conducted.
CREST syndrome | Genetic and Rare Diseases Information Center ...
Diagnosis is usually based in the typical symptoms (calcinosis, Raynaud's phenomenon, esophageal dysmotility, sclerodactyly and telangiectasia). Patients usually present at least three of these five main clinical features. Other exams that might help to make a diagnosis include:[2][4]
Blood exams: A blood sample can be tested for antibodies (ANA and anticentromere) that are frequently found in the blood of people with limited scleroderma. This isn't a definitive test because not everyone with limited scleroderma has these antibodies.
Skin biopsy: Sometimes doctors take a small sample of skin that is then examined under a microscope in a laboratory. Biopsies can be helpful, but they can't definitively diagnose limited scleroderma either.
Additional tests: Along with a blood test and skin biopsy, additional tests to identify lung, heart or gastrointestinal complications may also be conducted. The diagnosis of calcinosis (suspected based on finding the nodules) is confirmed with imaging studies. Multiple imaging studies are available to evaluate esophageal motility. The least invasive evaluation involves radiologic barium studies.
Thank you ! I think I need to talk about crest with my dr in my next visit!
Hi! ANA and anticentromere can be Crest but sometimes there are people who don’t have either of these antibodies.
Have you got Raynaud? Many patients with CREST suffer from it for a long time.
Talk to doctor and let us know because I have anticentromere antibody but nobody has explained me anything. I suffer from Raynaud ( at the moment and keep my fingers crossed). First episode when I was living in the UK then back to Spain I suffered from it every winter since then.
I just have frequent acid reflux right now beside that no other symptoms !
Ask the doctor to check it up ( anticentromere or Ana). Think in positive. Maybe it is just a temporary situation and it disappears as it came.
Ok
I talked to dr today she thought sjogern not crest 😔
Well, I think it’s better than Crest. Sjogren is very common with Pbc.
Did you get diagnosed with Crest?
Nope I haven’t tested yet
I ask because I have symptoms of it and will be seeing my doctor soon , going to ask him about it but as you know lots of symptoms overlap in autoimmune diseases , so when you have one you can have symptoms of others. How are you feeling lately?
I’m good..I haven’t have any problem so far.. just a fatigue and it might be due to urso beside nothing serious..my dr Wants me to conscious about things are happing with me but not too much..
Share the info, please
I agree fatigue can be from either one URSO or PBC or just life and stress,I am not tolerating the Urso at all went down on dose then back up still very ill from it goin off it again today for a week break asked my doctor about the Other newer one she said similar side effects and itching with that one not sure what to do now.....
Michiganpbc...I have fatigue & not on Urso. Which new drug is your dr referring to? Ocalvia?
Yes that’s the only other one right now , I am reluctant to try it if it causes same side effects and itching! I never had itching 😞
I thought it was. Well, I take it with no issues that I’m aware of. They did tell me one of the top side effects might be itching. Told me to keep Benadryl close by. Well, I bought children’s liquid & pharmacist calculated dosage. Liquid gets In system quicker. I understand your concern since you’ve had problems with Urso. Ocalvia has different ingredients so my dr didn’t feel I would have problems. So far he’s been right.
You are lucky, seems I react to everything I take 😡
I am very sensitive to medicines. I had whelps on Urso after 7 days. I just prayed Ocalvia wouldn’t present issues. You may do just fine with it. Don’t give up on yourself 😉
Thanks 🙏
You’re welcome. Wish I could be more help. I’m still fairly new with PBC. Keep us posted. Prayers to you🙏🏻
Thanks I will I got diagnosed last year with PBC still learning about it I read all I can on my autoimmune diseases keeps me busy!
I was diagnosed in June. I research a lot. The more info we have, the better ❣️
Yes knowledge is power right!
Sachin1234...I have no symptoms but ANA was positive, suggestive of schleroderma. I’m not putting it totally on the back burner but liver is top of the list for me😊
I'm too.. my liver is fine.. alp 93,ast 30, alt 49 , albumin 4.7 and t. Bili 0.41! I haven't stop drinking alcohol since I was diagnosed but I drink moderately. last month I was so excited I had 2 or 3 shots of tequila which I regret later😁.. im not proud of drinking and it is no good also so slowly I'm working on it to quit. 🙏🙏
Glad to see your numbers are so good. 👍😀
Just wondering, I suppose even when our med is working, we can still get the little ache/twingy pain on upper right?
I do every time I eat !
Ok, just wondered. Mine comes & goes. I guess with a wounded liver or ducts, we should expect such, lol!
Did your doctor say you have scleroderma? I have a very high ANA 1:1280
My ANA was little higher than yours. I have not seen rheumatologist yet. I was negative for everything in the ANA but suggestive of schleroderma.
Ok I know it can mean many things so I already have been diagnosed with PBC, Sjogrens with overlap Lupus symptoms which came after the Sjogrens diagnoses. They say when you have one autoimmmune disease common to have other autoimmune diseases come on which is what is happening to me........
Told I have pbc/aih overlap syndrome today!
PBC part of a larger autoimmune disease
