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Does anyone here suffer from crackling sounds from the lungs when breathing? I can hear it plain as day when I lay down. My scleroderma doctor can hear them, but my general practitioner could not. I had a pulmonary function test and my lungs don't have the same capacity as they use to. Also on X-Ray, it shows up as fibrosis.

Last night the sound was very loud, I called Healthlink here in Alberta Canada, it’s a service where registered nurses take your symptoms and determine whether of not you should see a doctor. Today they just said monitor it. Last night it really scared me because the sound was really bad.

Any other people with these symptoms?

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Hi Ronald,

 

I have lung involvement and one of the first symptoms my general practitioner and later my local lung specialist could hear with the help of a stethoscope were basel crackles in the lower half of my lungs. At that stage it was inflammation, which had it not been treated successfully with Cyclophosphamide, would have developed into fibrosis, which would have scarred my lungs permanently. Thank goodness my general practitioner was on the ball and sent me very quickly for a chest xray, which showed ground glass about two thirds of the way up my lungs (it appears like candy floss in texture on the xray).

 

I've included a link to our medical page on Pulmonary Fibrosis to give you some more information. I presented all the classic symptoms of shortage of breath, dry cough etc.and subsequently was diagnosed with fibrosing organising non specific interstitial pneumonia (NSIP)(fibrosing alveoli) which actually, if one has to have it, is probably the best sort to have, as it can be reversable and thankfully was in my case.

 

I do think that if you're feeling worried about it, then a visit to your doctor to check it out, as mine was, should be your next step.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Ronald,

 

Cyclophosphamide is a treatment for Pulmonary Fibrosis; in my case, because the fibrosis was treated at the inflammation stage, it was very successful.

 

It is a powerful drug; to be treated with respect and not something that would be prescribed willy-nilly, as the side effects are sickness and it can cause inflammation of the bladder, so should always be accompanied by drinking copious amounts of water.

 

I was fortunate and in my case it was successful; however, I would emphasise that all drugs work differently for different people and because it was successful for me, doesn't necessarily mean that it has the same affect for everyone.

 

It's not something that can be bought over the counter!


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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How long did you stay on this med?  How did they determine that is stopped lung damage?

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Ronald, I hear those when I wake up while sleeping during the night.  Sometimes I cough and that fixes it, other times I turn over and that helps, and once in a while I fall asleep with them.

 

I have mentioned that to my doctors.  They say my lungs are clear.  Interesting things friend.


Diffuse Scleroderma Diagnosed March 2009

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Hi Ronald,

 

I'll give you a little background to my treatment with Cyclophosphamide.

 

I was very lucky to be referred by my local consultant to a top lung hospital. As they had encountered Scleroderma and the lung fibrosis caused by it many times they were able to diagnose and treat me very quickly, a fact for which I'm eternally grateful. I received six IV infusions of Cyclophosphamide, at four weekly intervals.  Prior to this treatment, amongst the other lung testing they did on me, I underwent Pulmonary Function tests (PFT) which determined exactly how badly my lungs were affected. At my worst my oxygen/carbon dioxide diffusion was 48%. After the first three infusions I was tested again and my oxygen/carbon dioxide diffusion had increased to 65% and after the complete treatment course, my PFT showed an increase to 73%. Since then (and this was five and a half years ago) I have regular PFT's every six months.

 

Since then I no longer take Cyclophosphamide, but instead take an immune suppressant (Azathioprine; I'm temporarily off this medication due to my recent total hip replacement ) and also a few other drugs, to keep my lungs and Scleroderma stable.

 

As stated before, this medication is quite powerful and I was prescribed all these by my consultant.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Kathy,

 

I have a chronic cough, about 10 years. I was speaking to a nurse on the phone, a service we have in Alberta Canada, that you can call and get advice from a registered nurse, they will not diagnose. I told her my cough was from acid reflux, but she didn't think so. She felt it was from the lungs. I have the crackling sound all the time. My family doctor doesn't seem to think it’s a problem. But he's not an expert on Scleroderma.

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Hello Ronald

 

I just wanted to welcome to the forums! I find that there's nothing like asking the people who know this disease and all its intricacies, not because we're medically trained but because we  live the disease.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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At the doctor's yesterday. When I was there I asked him to listen to my lungs, as I was concerned about all the crackling sounds. He could hear abnormalities in both lungs. So I am going for a chest XRay to have that checked out. My dad who was 54 when he died of lung cancer from smoking, worries me that it could be cancer, as Scleroderma patients are at higher risk of lung cancer. I don't smoke. Will let you know the outcome.

Ron

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Hi Ronald,

 

I'm sorry to hear that your doctor was concerned about your lungs, but I'm glad that you're going to have a xray, to help determine the extent of any damage to them.

 

I do hope that the result will not show any cancerous changes; please do update us as soon as you have any news.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Ronald, how did your chest x-ray turn out? I'm thinking of you and sending good thoughts your way.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Shelley,

 

I go to the doctor Monday the 27th, for test results. Will let the board know results.

 

Ron

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I got the results back from the chest x-ray.

Findings:

This patient appears to be developing progressive lung fibrosis.

There is more to the findings, not good, recommends a CT scan.  I am being booked for one. Could be months, long wait times here for doctors and tests.

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Hi Ronald,

 

I'm really sorry to hear the results of your xray.

 

A CT scan will show more details of the ground glass (inflammation/fibrosis) on your lungs and you should have more tests to find out the extent of it. I've included a link to our medical page on Pulmonary Fibrosis Diagnosis to give you an idea of the tests which can be done.

 

Obviously, it's not great that you have inflammation/fibrosis on your lungs, but just to give you a little encouragement, I had inflammation on my lungs, which was treated successfully, so it can be dealt with. Time is of the essence, though; my treatment was successful because the inflammation was treated early, before it had developed into scar tissue.

 

Please do keep us updated on your treatment.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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