Scleroderma Support Group

Hi, I have been diagnosed with diffuse systemic scleroderma which affects my blood pressure and at this point my hands and arms. In the beginning(11/05) it was very bad and was rapidly spreading to my arms, neck, face, and feet and ankles. I was extremely fatigued and the doctors couldn't control my blood pressure. But I believe from what I have read, that you have a localized form of scleroderma which will not go internally as mine can... Now the good news is I am staying stable and have gotten much better by not taking anymore chemo and immuno-suppressants.I am going to homeopathy practioners and am seeing wonderful results.I have opted for a more holistic approach to my healing and so far it has been working for me. I think you can relax... but try to stay as healthy as you can through proper diet,etc,etc, which I'm sure you are aware of.There are also tons of info on the different types of scleroderma online that may help. Stress in my opinion is a defining factor for my symptoms rise and fall. I really need to work at lowering my stress level, so get the info you need, and do what you need to ease your mind. The doctors don't know as much as they need to to really give us the "answers", but if you do not have other symptoms, it sounds like it was properly diagnosed. You are probably the best one to know by how you feel...Take care and good luck. It isn't as scary as I first thought it would be.

Thanks much for your reply!

Generally, I'm very relaxed about it. Occasionally when it's growing, I get hit with a giant wave of fatigue and a few other health things go wonky. I may go ahead and try to adjust my diet anyway. I've also had rheumatoid arthritis since I was three, so maybe it'll have the ancillary affect of helping that at the same time.

If you haven't been checked by dr in a while I would get retested anyway just to be safe.

My daughter is 28 and still has several large active spots! She doesn't worry about it, was going to have the Puva treatment but would have costs her some money that she can't handle. Has anyone had the Puva?

Hi there,

I'm not convinced it ever "burns itself out". I developed patches on my left leg when I was 13 and the doctor's had no idea what to do. I was in the same boat as you. Then when I was 21 it spread to my right shoulder and I started to worry. I went to see a doctor in Baltimore who had this experimental PUVA therapy which basically exposed people to UV light and was supposed to stop/reduce the outbreak. Ever since then I haven't had another break out, no pain, nothing like that. About 8 years ago I went to the Rheumatology Department at Johns Hopkins Bayview and was told that I had generalized morphea and that the kind of Scleroderma I had was not something to worry about. I'm with you, I don't think there's reason to panic, but if it's been a while since you've seen a doctor you may want to talk to someone, especially if you've given birth. I don't know if that makes a difference or not. Good luck and if you ever need to talk, I'm here. :-)

I think the only way that the doctors can know whether it's true morphea or systemic, is to test the internal organs for damage. If they don't look, they can't find. If you haven't had testing for pulmonary hypertension, then perhaps it's time, especially if you are having any huffing and puffing or dizziness with mild exertion.

Are you having any gastric reflux or sensation that food lingers in the lower esophagus? If so a swallow test might be in order.

It might be wise to see a scleroderma specialist for an opinion. There is a list of the U.S. scleroderma specialists at http://www.sctc-online.org/institu... .

Gardener, that's an interseting comment.

I did go ahead and get tested for any antibodies a while back, and they all came back negative. But then a few months ago I developed some intestinal issues. They went in looking for Celiac's, which they could never confirm or deny (all they know is I'm responding well to the gluten-free diet, so they're keeping me on it), but during the endoscopy, they did discover I have Barrett's Esophagus - which seems weird, because outside of some heartburn during pregnancy, I've never recall having a reflux issue at all.

I'm wondering now if I should start pursuing this again.

Loyhargil,

Well yes, I think you should check that link I posted, that shows scleroderma specialists in the various U.S. states. If you aren't in the U.S. let me know and I'll post the link for the European USTAR doctors.

When you say you were tested for antibodies, do you mean the ANA, or did you have the separate tests for SCL-70 and anticentromere. I find that the ANA test is poor at showing the anticentromere antibodies. I have those. In fact last month I had a totally false-negative ANA test for the first time ever after many, many positives, and yet an separate anticentromere test done the very same afternoon showed those antibodies to be SKY HIGH!

Chicago is a four-hour drive away, and it looks like there's a specialist on the list at Northwestern.

In the meantime, I'm going to start again with my GP, so my insurance will cover referrals. There's also a rheumatologist nearby at one of the university hospitals who appears to have some scleroderma background. I'm going to see if I can get referred there. I know they take my insurance there, since I'm currently seeing a TMJ specialist at the same university.

In the meantime, this morning I found more patches on my right forearm - one linear just above my wrist, one round one about half way up to my elbow, and another linear halfway between the two. I know they weren't there a year ago when I first went back to the doctor about it. They're still fairly light, but they're definitely there. So last year's blood tests may have been negative, but at least (I think) I know I'm not crazy. Something's stirring.

I've also been researching this week more and more. Gardener, you're right, the punch biopsy's aren't always accurate, I didn't know they can't distinguish between localized and general scleroderma. No one told me that 18 years ago. I'm also finding out gluten intolerance can also be associated with scleroderma, something else I didn't know.

I've also noticed a lot of flat red spots developing on my face and upper arms over the last year. Didn't know THAT could be a symptom, either.

Time to move on this again.

Yes, it's definitely time. And it might be good to check whether the doc at Northwestern takes your insurance. Most of the university medical centers take all the various insurances.

As for celiac disease, both that and scleroderma are associated with the DQ8 gene, which I have. In fact a multitude of autoimmune diseases are associated with DQ8, which is one of the two major genes involved with celiac disease. And celiac disease itself seems to be associated with a large number of these other autoimmune diseases., possibly because of its association with DQ8!

Although my celiac antibodies and endoscopy were all negative for celiac disease, that's when they discovered that I have the DQ8 gene. And having several autoimmune diseases, it prompted me to start researching all the various connections between DQ8 and autoimmune disease. The upshot of it all is that finally I drew all this information together by writing an article that I posted at celiac.com. It's at:
http://www.celiac.com/articles/218... and a version of it was included in their podcast #18.

I have gone gluten free, not for celiac disease, but in the hopes that it might lessen the severity of my other autoimmune diseases, and make it less likely that new ones such as diabetes will be triggered.