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Biomarker for Diffuse Scleroderma skin has been discovered!


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Organ Involvment In Limited


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#1 Patty

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Posted 25 April 2007 - 05:18 AM

hi everyone!!

I was wondering if anyone knows what the normal organ involvment is in limited scleroderma. I know that we each own our own sclero meaning its different for each of us, but if anyone has any idea I would love to know. I have heart, GI, liver. Is this normal for limited?? Also I have more tightning on my hands. near my wrist on my under side of the hand.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#2 TJ903

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Posted 25 April 2007 - 08:09 AM

Patty,

Wish I could help. Have you been diagnosed since Oct '06? Is the organ involvement something new?

Mine is rapid onset diffuse with almost total skin involvement (scored 23) , lung, esophogus, kidney, and heart involvement.

I know there are good reference points on this website, but like you said - we all have 'unique' symptoms.

Best of luck - TJ

#3 Patty

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Posted 25 April 2007 - 09:01 AM

HI TJ,

I got my diagnosis in June of 06 and the organs have been diagnosed one at a time from about June of last year also. I had a double heart cath and thats how we know I have the heart involvment, I have GI trouble ( slow Motility and reflux, esophogus)
had a few GI type of scopes and as for the liver I had a liver byopsy last year as well. I know ddiffuse has much organ involvment but I have no idea about limited.

hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#4 janey

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Posted 25 April 2007 - 09:35 AM

Patty,
The more I read about systemic scleroderma, the more I question exactly what type I have. I know it's systemic and it's not CREST. I got this off our Limited Scleroderma page.

Limited Scleroderma is diagnosed when there is tight skin limited to the fingers, along with either pitting digital ulcers (secondary to Raynaud's) and/or lung fibrosis. This is considered to be a "milder" form of Scleroderma. The skin of the face and neck may also be involved in Limited Scleroderma.
Limited Scleroderma often causes Raynaud's and esophageal problems. Occasionally other internal organ involvement occurs, but usually only after many years of the disease. The onset and progression of Limited Scleroderma is usually very slow, and the outlook in general is very good.


Then on the diffuse scleroderma page, it talks about having skin involvement above the wrist or elbows.

Originally it was thought that I had diffuse because the onset of the disease was very fast. But skin involvement never even reached the wrist. My rheumatologist to this day is still looking for tight skin "anywhere". Even the skin on the hands has softened. So now we're thinking either limited or scleroderma sine scleroderma. But in reality, it doesn't matter anymore. We know it's systemic with an overlap of polymyositis, so we're just trying to slow things down. Heart involvement (complete heart block and atrial flutter) became noticeable in year 2 ("noticeable" in an understatement) and lungs (PH and ILD) in year 3. No liver or kidney problems and just heartburn/reflux with the GI. Then of course Raynaud's.

So it's very non-predictable and as you know, we're all different. I think I'd go with the comment "The onset and progression of Limited Scleroderma is usually very slow, and the outlook in general is very good" biggrin.gif

Big Hugs,


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#5 Sweet

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Posted 25 April 2007 - 09:46 AM

Hey,
Looks like Janey gave you a few good links. I just wanted to add that CREST is supposedly the 'limited' version, but you'll find didn't feelings or idea from doctor to doctor as to if it will stay limited or morph to diffuse. They are both systemic however. Supposedly with 'limited' the skin is supposed to be the only organ affected other the GERD. The worse symptom being PH. So see to me, that means your lungs/heart will be involved. So frankly it's all a gray area to me.

Did I get you even more confused? :blink:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 kiwimum03

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Posted 25 April 2007 - 12:50 PM

Hi Patty,

I have a question about what kind of problems you have with your liver. did they diagnose sclerosis from the biopsy?
I am waiting to see the GI doctor mostly for my reflux problems, but I have had constant liver pain for almost a year, a midly fatty liver, and elevated Alk Phos and GGT, of course my doctor thinks all of this is from my fatty liver, but I am just curious.

thanks,
Irene

#7 Clementine

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Posted 25 April 2007 - 03:44 PM

OK, Well, just to mix it up a bit, I was told by my Scleroderma expert that I have Diffuse Systemic Sine Sclerosis, and I do have CREST except for Calcinosis. So figure that one out. :)
Jennifer

#8 CarriePan

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Posted 27 April 2007 - 04:31 PM

I was diagnosed with limited with crest. I have skin and esophageal involvement, so far. It looks like I've been beaten up on my legs lol my hands and feet/ankles are swollen, dark thick patches on my legs <yuck> and my fingers feel stiff esp in the morning when I can't brush my teeth...
This is slow?? I see a dr. every couple weeks for something. It's getting annoying.
Take care~
Carrie
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#9 americanmike

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Posted 27 April 2007 - 06:50 PM

I was very surprised to see the survival numbers at 10 years compared by antibody type and Limited vs. Diffuse as an article on this website, and what was shocking was the limited survival wasn't always better than diffuse. No doctor will tell you that. But that's what the data was. It's posted here on this site and analysed over 2000 cases of scleroderma.

Organ involvement can occur in either subset of the disease. And the subsets themselves are "theoretical" distinctions. Some rheumatologists have argued for different criteria for diffuse vs. limited. And other sclero experts have proposed altogether new groupings based on other things besides extensiveness of skin involvement. Still others argue that antibody profile is the important distinction.

It's all enough to make your head spin. Some basics...The less skin involvement the better! The less organ involvement the better. The slower the onset the better. The less inflamatory markers at diagnosis the better. Each persons experience is variable and it's hard to estimate prognoses based on just about anything. That's what I know. Not a doctor, but reading everything on this site certainly empowers us ;)

Michael In Florida

#10 CarriePan

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Posted 28 April 2007 - 06:40 AM

Hey Mike~
Well, I'm just gonna sit back now lol Que sa ra sa ra.... what ever will be will be. OK I won't sing :o It surely does make your head spin. My dr. said she's going to have an intervention to take away my computer :lol:
Hope you are doing well~
Carrie
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#11 nan

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Posted 29 April 2007 - 05:34 AM

Patty,
I was diagnosed with CREST without the S. My understanding is that most doctors now call CREST limited scleroderma. Anyway my esophagus is affected. My stomach is slow emptying and I have watermelon stomach or if you want to sound really neat, Gastric Antral Vascular Ectasia. Essentially the T from CREST in my stomach. It is very rare and usually means you have scleroderma if you have it. I bleed spontaneously and I can't take any anti-inflammatories. I also can't take prednisone because that is what caused my horrible GI bleed. I went a bit off the subject. I was just diagnosed in December 06, but have had Raynaud's, Sjogren's, and Fibromyalgia since 1998.
Take Care!
Nan

#12 Piper

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Posted 29 April 2007 - 07:46 AM

Hi Mike & all, Just wondered if you could direct me to where that study was posted on this site. I'm not diagnosed but do have the RET is Crest. My last ana was low 1:40, I guess it would be called negative. My G.P seemed to think this was a positive thing. The pattern changed however from speckled and homogenous to speckled and nucleolar. I don't know what that really means or if it's significant but I know I feel worse all the time. Also my hand tightening comes and goes. Isn't that weird? One day I can't open my hands and the next the skin is almost normal again. Thanks

Hugs, Piper