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I have limited Scleroderma and Lupus. My rheumatologist has never mentioned having a PFT. Is it time for me to bring this up? I had a heart catherization 2 years ago and it did not show signs of PAH. I am 54 and was diagnosis with Raynaud's and Lupus 25 years ago. Four years ago was told I have limited.

Is a PFT routinely done for limited? Those of you with limited what did you find when the test was done?

Sarah

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Hi Sarah,

 

My dr.'s ordered a PFT for me but that is because I was having difficulty breathing and they could hear crackling in my lungs. I guess at taht point the ILD was already there and spreading. It won't hurt to ask your dr if they think it is necessary.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

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International Scleroderma Network (ISN)

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Hi Sarah,

 

I first had a PFT a little over two years ago because I was having some shortness of breath. It came back showing I had mild obstructive lung disease (whatever that means). This past August I was having periods of shortness of breath again and so asked my rheumatologist if I should have another one. He always listens to my lungs at my visits. After listenng to my lungs he told me he didn't think my SOB was due to lung issues, but agreed it wouldn't hurt to get another PFT just to have two baseline points. I had it done about 1 month ago and my numbers were almost identical to what they were 2 years ago....no signs of PAH and the mild obstructive lung disease could be anything and isn't serious enough to require treatment or medication.

 

I agree with Lisa in that it certainly wouldn't hurt for you to ask your rheumatologist what he thinks about your having one.

 

Warm wishes,

Heidi

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Sarah,
I found this on the ISN 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 "

Since there is a possibility down the road of organ involvement, I would think that a baseline PFT wouldn't hurt to have in your file. It's a very noninvasive test and was one of the first test that I was given after diagnosis.

Talk to your rheumatologist about it.

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)

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Hi Sarah! I have also limited scleroderma and have both a PFT and an echo done every year, even though I have no symptoms of lung issues. I believe these screening tests are routine. Good luck! Best, Claudia

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Thanks everyone for your replies. They were very informative.

 

I will definetely bring up a PFT and echocardiogram with my rheumatologist. I have been seeing her every two months for Lupus related problems.

 

She always listens to my heart and lungs and asks if I have been having any shortness of breath. I feel she is watching for heart and lung involvement.

 

I have been taking Prevacid for several years. Two years ago I had a colonoscopy. At the time the GI doctor said I would need an endoscope down the road. That is another test I need to ask about.

 

One of the reasons I have not been bringing up testing is because Medicaire health insurance just kicked in Nov. 1 after a two year wait after obtaining SSD. I am lucky in that it will be secondary with my husband's health insurance being primary. I plan to get thoroughly checked over after the first of 2007 when new deductables start.

 

Sarah

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