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To all who have Limited/Crest


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9 replies to this topic

#1 summer

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Posted 11 March 2008 - 05:41 PM

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:

#2 relicmom1

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Posted 12 March 2008 - 01:39 AM

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

#3 nan

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Posted 12 March 2008 - 02:41 AM

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

#4 scampie5

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Posted 12 March 2008 - 03:16 AM

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

#5 CraigR

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Posted 14 March 2008 - 09:38 AM

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

#6 SpaceysChick

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Posted 16 March 2008 - 12:23 PM

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

#7 janey

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Posted 16 March 2008 - 12:47 PM

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)

#8 Michelle2

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Posted 17 March 2008 - 09:36 AM

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

#9 summer

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Posted 17 March 2008 - 11:30 PM

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

Take care
Celia

#10 Sweet

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Posted 18 March 2008 - 08:19 AM

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)