Scleroderma

Jazi · Post by **Jazi** » Fri May 24, 2013 6:40 am

Anyone familiar with this?

Mimi · Post by **Mimi** » Fri May 24, 2013 7:58 am

My cousin has had this for years. I believe it is some lung disorder. Right?

Jazi · Post by **Jazi** » Fri May 24, 2013 8:02 am

I don't know... was just diagnosed. Apparently, from what I read, it can effect lungs, digestive, kidney and heart. So far my digestive and lungs have been affected.

Zizzle · Post by **Zizzle** » Fri May 24, 2013 8:24 am

So sorry Joanne.

It's a close cousin to what I have. Some people with DM have overlap syndromes...sclerodermatomyositis. It's a thickening/hardening of the skin and overproduction of collagen. Did you have Raynaud's in your hands and feet? That's an early sign. Do you have the localized or systemic form? What's your treatment going to be?

Jazi · Post by **Jazi** » Fri May 24, 2013 8:29 am

I do not have Raynaud's. I don't know yet if it is systemic or localized yet as it takes forever for physicians to tell you anything and and they always seem to beat around the bush. That is primarily why I am bringing it up here because I know I will get more answers.

I google it constantly and I am still confused. I have no skin problems other than the one rash like area on my left shin.

You have Lupus, right?

Zizzle · Post by **Zizzle** » Fri May 24, 2013 8:35 am

I have no skin problems other than the one rash like area on my left shin.

So how did they diagnose you? Based on blood auto-antibodies?

I do not have Lupus, I have DM (below), but they are all related.

Jazi · Post by **Jazi** » Fri May 24, 2013 8:42 am

Yes, blood work for auto-immune.

I don't know if you recall my last ana results. Titer I believe is higher than last time, 1:320. Pattern is speckled and ANA screen is positive.

My Scleroderma ABS (SCL-70) is 2.8 pos H.... normal range is <1.0.

My Rhuematologist said I most likely have Scleroderma and she moved my appointment up to June 7th instead of July.

I have never heard of any of these diseases (other than Lupus) until earlier this week.

How are you handling your DM?

Zizzle · Post by **Zizzle** » Fri May 24, 2013 8:57 am

Personally, I wouldn't get too worked up about an ANA of 1:320 and a + scleroderma antibody. Of course you are at risk of developing the disease, but do you have reason to believe the disease is active right now? How are your lungs affected? Do you have PAH? If I had gone on antibodies alone, I would have been diagnosed with rheumatoid arthirtis and autoimmune hepatitis 8 years ago! And here I am...don't have either. My ANA was 1:1280 and speckled for many years and nothing dreadful happened (besides MC).

My DM had a very slow and mild presentation. No muscle involvement, just an itchy, red skin rash that evolved over 9 months, eventually requiring prednisone and an antimalarial last December. I've tapered off most of the steroid and the anti-malarial (Plaquenil) seems to be keeping the rash at bay. I think my MC diet is certainly helping. Most people with DM are much worse off than me.

Zizzle · Post by **Zizzle** » Fri May 24, 2013 8:59 am

Incidentally, I have a male friend who tested positive for Scleroderma antibodies 10 years ago. He promptly cleaned up his diet, lost weight, started exercising more, and he seems to be OK. His only symptom is Raynauds in his hands.

Post by **tex** » Fri May 24, 2013 11:42 am

Joanne,

with Zizzle. As I described in detail in chapters 9 and 16 of my book, I truly believe that diet is the key to preventing and controlling virtually all autoimmune-type issues. The medical community is still working in the dark ages when it comes to dealing with autoimmune-type syndromes.

Back when I was still reacting (and before I changed my diet) I had the markers of a number of so-called autoimmune diseases, so that if I had pursued it, I have no doubt that I could have been diagnosed with many of them. They all faded away after my gut healed.

Tex

gluten · Post by **gluten** » Fri May 24, 2013 2:40 pm

Hi, I know a woman from Canada who had Scleroderma she had hair test analysis, took the recommended nutrients, changed her diet. She has no more symptoms and went from a wheelchair to walking five miles a day. Jon

Fish2575 · Post by **Fish2575** » Sat May 25, 2013 12:14 am

My friend with scleroderma swears by saccharomyces boulardii, the preventative yeast. She says if she takes it regularly she has no flares. I have Lupus too. Took me years to get a diagnosis. Scleroderma can be sans the derma part. That is what my friend has, strictly stomach issues that cause a blockage type reaction where she can't swallow food. I too believe that if you can go to all real food and make sure there is no gluten, dairy, or soy in your diet, you may seem improvement immediately!

Jazi · Post by **Jazi** » Sat May 25, 2013 7:13 am

You guys are the best... thank you for all your responses!!

Zizz, I don't know what PAH is

I have been having inflammation in my lungs for the past year and it actually got worse this year, had a brochoscopy a week ago (the doc collapsed my lung and I had a tube inserted for two days, not fun!!) He's lucky he's cute

When I saw him yesterday, he said the biopsy only confirmed inflammation, which is good news and that it could possibly be related to Scleroderma.

So, being that the two areas that are affected, digestive and lung, is why they believe it is Scleroderma( besides the blood results) He is sending me for an Echo as well to make sure my heart is okay.

Now that I have my Enterolab results, I know what foods to definitely avoid, although there are so many other foods out there that I guess I will just have to eventually find out on my own.

My diet has improved within the last year and now that I can breathe again (they removed the tube from my lung yesterday) my doc said I can exercise again but to wait til after the weekend.