Scleroderma Support Group

Hi there melev. Welcome to the board. I have crest also plus some other autoimmune stuff.i found a lot of good information on limited scleredoma(crest) on the mayo site if you would like to check there. hugs and hope this helps. marilyn

Hi, and welcome,
I am fairly new on this site. I was dx at about age 40. I was extremely tired, and noticed a lot of telangectasia (small blood vessel "leaks") on my hands and face. I had these removed with lasar and most of them have not returned. I have been told that the symptoms are variable. Some people only have a few symptoms, ex. CRST, meaning they lack esophogeal dysmobility, or other variations. I am now 60 and have periods of fatigue and gastrointestinal problems that have produced anemia, etc., but other than that I feel pretty good. Like many other chronic illnesses, you need to be vigilant about rest, diet, and follow up. One day at a time....PamW

I would like to know more about centromere pattern too. My ANA is 1:640 with the centromere pattern and I was told don't worry about it. A lot of (older) people have a positive ANA. It doesn't mean anything.

On-line I see it is supposedly either limited scleroderma or raynauds. So, how many people with just plain raynauds have this pattern.

I would love to believe I have just primary raynauds and shouldn't worry, but its hard when I also seem to have developed a very mild reflux, a slightly sore shoulder that doesn't get better and fingers that seem a bit swollen and mildly sore when I wake up in the morning.

In a lot of ways I'm very healthy. My frustration is having one rheum tell me I have limited scleroderma (right before we moved out of state and before the blood work was back), then having a new rheum. (with the blood work) say, "I don't think you have a problem at all" and ANA doesn't mean anything.

Stevie I would suggest you get a new rhuemy. I have limited or crest also and raynauds also. They usually go together.My fingers are always sore and swollen in morning and sometimes all day. Are you on any medications such as plaquinal? I would be requesting more detailed tests.

I have been diagnosed with limited scleroderma after they diagnosed me with PAH - they say they usually get the scleroderma first and then PAH. What I understand is both is fibrosis one of the skin and the other is my lung. I am not sure about crest. But I have autoimmune issued as well. A good RA doctor is important. I would hope they would be able to answer your questions. I do have problems with my PAH doctor telling me I need a Primary Doctor and the truth is they are afraid to take me because of the PAH. So my RA doctor works well with me. Love and Prayers, Berta

I have my rheumy report which says strong Ana positivity at 1:1600 with positive anti Ro and La . Anti cardiolipin antibodies negative and complements normal.They now say unclassified connective tissue disease instead of mctd and centromere antibody positive .
I find it hard to understand all the diagnosis also which tend to change I also have been told I have Sjogrens. For me it is the restrictive lung function and my joints which ache so badly let alone the tiredness and oesopageal dismobility . I want to know about calcinosis as I am waiting to hear what they will do about my ankle where I have it and it is affecting my tendon? I also have carpal tunnel in my wrists now and I can see white kind of lumps under my skin there .I have taglatia but these seenm different .How do other people have them treated? Thanks

You must insist your doctor order the anti-centromere B antibody test, or find a doctor who will. This test is over 98% specific for CREST. If this test is positive you only need two items in the CREST acronym to be diagnosed.

well I don't know what I have the first Dr. says Morphea am going to Rumatologist next wed... I just feel so awful...will let you know what I find out...

Melissa,

I have had anti centromere antibodies in the past. Lots of fatigue, brain fog, numbness tingling, raynouds, reflux, swallowing difficulties, gi issues, etc. I was tested several times for ms in the begining. I am in my early forties and probably had this disease since I was 19. I was able to have kids w/o complications. However, the fatigue for the last 10 yrs has at times been severe. Anti centromere can be seen in limited sclero. I am not sure if there are other illnesses it is seen with. I know a lot of people with sclero who go back and forth with positive and negative antibodies. I would recommend you see a sclero specialist. My doc just treats the symptoms as they appear. It is not easy trying to balance family, working and taking care of yourself. If you can, try to limit your stress as that seems to make it worse. Many people live a long time with this disease. Try to be positive and keep a good attitude. It does make a difference.

eah

I want to amend what I said earlier about only needing 2 of the CREST acronym items along with the anticentromere antibodies, in order to be diagnosed with CREST. That's what I read on the web somewhere, but they apparently don't agree with that at Johns Hopkins. I recently went to the Johns Hopkins Scleroderma center, and even though I had swelling fingers, a telangiectasia on one fingertip, Raynaud's in my feet, and gastric reflux with food lingering in the lower esophagus, they still have me only classified as having "undifferentiated connective tissue disease with features of CREST." They won't count the swelling fingers, and the one telangiectasio only counts as 1/2 a feature, since they require 2. So the consider I have 2 and a half of the acronym features, and I think they require 3. They also say the Raynaud's in just the feet is atypical (I think they usually see it in the hands first), and that my nail folds have an abnormal branching pattern, rather than the large loops they look for in CREST. They have scheduled me for a pulmonary function test and a cardioechogram though.

Meanwhile my anticentromere antibodies are literally off the chart high. It has me worried.