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If you all remember I had an appointment last week to see my cardiologist to rule out PH as I have had increased constant SOB, lightheadedness, and pain in my lungs when breathing for the last three weeks.


I am being booked in to have a stress test and right heart catheter done soon.


My Rheumatologist called me this morning to see how I was and how I went at the appointment. I mentioned to him that since seeing him (my rheumatologist) my lungs have been hurting when breathing and also it is getting to the stage that I can't even talk or eat as I am that breathless and my lungs hurt too much!

He said it sounds like inflammation around the lungs associated with scleroderma.

He has booked me in to have a chest x-ray and brought my appointment forward to see him next monday.

Also it seems strange to me why I experience the pain in my lungs around early evening time and not so much during the day. My SOB can come on at any time.


Could someone please explain to me what this is and what the treatment usually is.


Many thanks

Celia <_<

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Hey Celia dear,

well I'm no doctor but your lungs probably hurt in the evening cause the lung muscles are tired. I take OTC pain relievers. you should rest and try not to do anything too strenuous. Sometimes I found myself SOB doing laundry. Pace yourself when you walk.


I was SOB all time time with funny sharp pains in my lungs. I can't walk and talk and eating can make me breathless. My lung diagnosis is interstitial lung disease (aka pulmonary fibrosis) caused by scleroderma. Are you getting a PFT? Also have PH - some of my PH meds have helped with the SOB. You probably don't have all of what I do... I hope the best for you :)


My first treatment was prednisone followed by 6 months of IV Cytoxan. Then, Imuran. Every doctor prefers a different line of treatment. Some like Cellcept or Methotrexate.


Rest lots,


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Sorry to hear that you are having so much trouble with your breathing, hope you get answers soon for that. Good luck on your stress test and right heart cath.

I must say how lucky you are to have a doctor to actually call you to see how your doing!! Too bad most other doctors are not like that!!!!!



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Hi Ced,


I agree with peanut, I would think the muscles are tired and you are using them all day. I do know there can be inflammation in the muscles. When I get breathless with flareups, it really uses my energy. It is the worst feeling and I hope they get to the bottom of your problem. Are you getting PFT's? Do you have a pulmonologist?

Hope things get better.

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Thanks for answering my post. I am due to have a PFT next week and no I don't have a Pulmonolgist as yet. I am seeing my rheumatologist on monday, he may mention it then.


Best wishes


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Hi Celia,

I have ild and most of my discomfort lately is at night when I am lying down. I saw a pulmonologist first and he did all of the initial testing, confirmed ILD and said he couldn't help me because it was sclero related and he really wasn't sure to do because he didn't know much about sclero. At least he was honest. My rheumatologist who is a sclero specialist handles all of my care, ILD included.





Please let us know what happens at your appointment.

Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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