summer

To all who have Limited/Crest

10 posts in this topic

Hello everyone,

 

I'm just wondering how many of you that have Limited/Crest Scleroderma that has either Pulmonary Hypertension or Interstitial Lung disease, and also whether one goes with the other?

 

Many thanks

Celia :unsure:

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Hey ced,

I have Crest (minus the "C" so far), but the rest is full blown. I do have some interstitial lung disease, mild at this point. And they are now in the process of working me up to see if I have PH I have never had the right heart cath so many say is the gold standard to diagnosis pulmonary hypertension. I've had several echos thru the years and on one of themit states pulmonary hypertension, (and that was never followed up on) so we shall see. I changed to a new rheumatologist and my follow up with her is in May We shall see..........


Peace :)

Barbara aka relicmom1

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Celia,

At this point I don't have either. From what I understand one doesn't necessarily go with the other, but I might be mistaken. Have a good day!

Nan

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hi ced , i have both my lungs are 50% damage and my blood pressure is high and controled with medication Lynn

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I have CREST (actually, CRST). I've had it for 30 years. I've had PH for about the past ten years. If you research, you will probably find some sort of statistics for the likelihood of PH and CREST. They definitely go together.

 

Craig

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I have been told that I have limited (didn't know this until a few months ago, was never told this until recently). I also have pulmonary fibrosis, and am on oxygen 24/7

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Celia,

I have mild versions of both ILD and PH. However, having one does not mean you will get the other. Here is some information on the correlation between pulmonary fibrosis and PAH.

 

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~

 

I have Limited and currently don't have either. I haven't heard anything that supports that it goes along with either of those.


Take care and stay warm,

 

Michelle

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Thanks everyone for all of the replies, it is much appreciated.

 

Take care

Celia

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I haven't been told yet I have any PH or lung problems, but for the past couple of months I'm suspecting such. My next appt is in a couple of months and I'm going to bring it up. If I have to walk to the phone and then talk, the first few minutes I'm pretty out of breath.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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