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Elvis

Lung tissue thickening

4 posts in this topic

Recently went to see general practitioner because I had been experiencing breathlessness and more fatigued than ever. At first I had this when I walked upstairs and I put it down to deconditioning but when I started to feel breathless when I was sitting down or talking, I thought I'd better get it checked out. Was sent for an xray and results of that showed some thickening of lung tissue at the base of each lung. Now have an appointment for a CT scan of my lungs. I am also having a liver ultra sound on same afternoon (18 March) as blood tests showed some elevated liver results. Tiny bit anemic as well.

 

Just wondering if anyone has had a similar experience or results like this?

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Hi Elvis,

 

I'm so sorry to hear that you've been experiencing problems with breathlessness and fatigue.

 

I can understand your concern as I had a similar result from the initial xrays of my lungs. They showed "ground glass" (which actually looks rather like candy floss) about a third of the way up each of my lungs and like you I then had a CT scan which showed the "ground glass" and inflammation in more detail and I was then referred to a local consultant who thankfully had the good sense to send me hotfoot to The Royal Brompton Hospital. I was very fortunate that the inflammation on my lungs was caught at a very early stage before it developed into scar tissue and so some of the damage to my lungs was reversible, after I'd received treatment with Cyclophosphamide. I actually have a fibrosing organising non specific interstitial pneumonia (to give it it's full title! ;))

 

Due to my having to have the above treatment and taking an immune suppressant (Azathioprine) my liver enzymes were raised in the beginning. However, it didn't necessitate a liver ultra scan and I simply reduced the amount of Azathioprine I was taking, which solved the problem, although I do have blood tests every 6 weeks to ensure that my liver enzymes, white blood cells etc. are within the acceptable limits.

 

I do hope that everything will be okay with your lung CT scan and liver ultrascan; please do post again when you've received the results and let us know how you got on.

 

Kind regards,


Jo Frowde

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Hello Elvis

 

Sorry to hear your results aren't good. As Jo has explained there is treatment available for lung fibrosis although not pleasant and it's possible to have really good results as Jo did. I don't know anyone with liver issues so can't comment there.

 

Please let us know how you get on and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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International Scleroderma Network (ISN)

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Hi Elvis,

 

Yes I have just about got through a whole year of symptoms similar to yours.   I have had elevated liver function results for many years in spite of having no alcohol since 2003, no chocolate and no caffeine :crying: .

Recently I was referred to Liver specialist and the outcome of that is that I have been diagnosed Primary Biliary Cirrhosis.    This is not necessarily an unusual thing for a person with Scleroderma and, in fact, I now have three autoimmune disorders and therefore must qualify as having Multiple Autoimmune Syndrome (Oh! Joy!!).

 

I am often a tiny bit anaemic, as you put it, but for the past six months or more have been seriously anaemic.   Have been on an oral supplement for about 3 months and slowly the breathlessness and fatigue are lessening.   I am quite a bit older than most of you other folks and I am getting to the age where all sorts of other things can come into play to confuse things.   However, my B12 levels are OK, I don't seem to be bleeding anywhere internally (or externally thank goodness!!) so it just has to be put down to my disease.

 

As long as you are following these things up and don't get stressed too much about it all, you will probably jog along like the rest of us do.

 

Best wishes

Judyt

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