does anyone else suffer from shortness of breath like me? it is a relatively new symptom and quite worrying as i think it means a deterioration in my general health. any exertion leaves me gasping.

also developed nausea and lack of last ultrasound some degree of cirrhosis and im waiting for a fibroscan, so maybe this will give me some idea of the damage.

welcome any comments thanks

12 Replies

  • Spoul,yes I get breathlessness common saying to my kids is "I feel like an old woman".. I get to top of stairs and need to stop and take 2 mins...last few weeks have been difficult with nausea and sickness and even looking at food made me wrench,no I'm not pregnant.Also new development us last week or so Iv woken out a sleep mith pains in my hands,,like you could rip them off pain :((((..... I'm sorry to hear your finding things difficult & I do hope you will be ok,chin I up & look after yourself :) x

  • Hello spoul.

    Sorry to read that you are feeling a bit, well under the weather at present.

    Shortness of breath can actually mean other things, not necessarily the lung area as such. Can be due to low counts in blood, ie HB. You're not low in the ferritin are you, that can cause breathlessness due to mild anaemia.

    My ferritin normally comes up just under the normal range each time I have the FBC. I also have a point under in the HB too. I know that if you are just under what is considered normal in the HB which I found can actually be quite normal for a lot of females, then the body can compensate. My GP kept going on about part of my FBC later last yr but I was adamant at the time there was nothing else wrong with me at the time. Over a year on I'm still ok, the bloods are usually the same where the FBC is

    concerned. (My LFTs altho' still abnormal are pretty good since starting urso Dec 2010.)

    Just another thought, you aren't taking any relatively new tablets for something else as certain drugs can cause certain things too.

  • Thanks for your reply. No I'm not anaemic but I did get chance to talk to practice nurse yesterday who said its a common symptom of cirrhosis just need to slow down, at this rate I'll be stationary soon, haha

  • I was short of breath...they did asthma test....negative. Guess just PBC related ???

  • Have had shortness of breath for the last 2 years following severe chest infection. Was diagnosed as possible asthma and inhaler helps, at least with persistent cough that also developed. Remain unconvinced about asthma. Do feel exhausted at times on reaching the top pf the stairs but able to go fast on the flat!.Also able to cope with 3x60mins circuits per week until torn muscle last week stopped mePbc or not? Uncertain.

  • I get shortness if breath too on exertion..

  • I have just got my lungs tested yesterday... There was irregularities.. However these are believed to be linked to scleroderma. I'm waiting to see specialist to get a full explanation..

  • Thanks for your replies, good to know I'm not alone. It's pretty grim this disease but I do try to focus on what I can do as opposed to what I can't do! Cheers

  • I became breathless and was diagnosed with asthma. But since found out "autoimmune asthma" is slightly different; I take a wonderful drug called Montelukast that solves the problem 99.9% of the time.

  • Hi yes I suffer awful shortness of breath this was my first symptom I'm AMA positive but liver functions have always been normal although I have been told I'm symptomatic and my liver functions will eventually change my shortness of breath has gotten worse over the last five years it's also happening whilst sitting down now not just on exertion I was told asthma by gp but no Inhalers worked so was sent for full pulmonary tests and high resolution ct can all where clear although bike test showed retaining carbon dioxide I asked at my last appointment at the liver clinic a few weeks ago was this common and was told people with Pbc sometimes develop a lung disease called pulmonary fibrosis almost fell of the chair as I know this is very bad although he said it's usually caused by an associated disorder called Sjögren's syndrome which many Pbc patients have don't wish to frighten anyone but I think to many GPS blame shortness of breath on asthma my test result for this was that I didn't have asthma I would always push for more tests and ask to see pulmonary doctor also I have read that the thyroid can cause this shortness of breath I have a lot of anti body's attacking my thyroid I'm also told I don't have cirrhosis although they won't do biopsy because my liver tests are still normal can I ask what montelukast is as I'm desperate struggling to breath all day lung doc is keeping an eye on me he says not hyperventilation and not panic attacks so I need to get to the bottom of this take care everyone x

  • I would say this is what they are testing me for and the irregularities showed. Now waiting to speak to specialist.. I've scleroderma and secondary sjogrens... I'm top of pbc:-(

  • Thanks for your reply, I've haven't heard of the pulmonary disease you mention but I will talk to my consultant about it

    Take care

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