Pbc and breathing problems

Hi everyone I was diagnosed with Pbc march 2011 I have positive AMA and normal liver function tests so not started on urso I suffer very painful salivary glands on a daily basis so I have been told possible sjogrens but no signs of sjogrens in blood or lip biopsy my other worrying symptom is shortness of breath pulmonary function tests where normal but bike stress test said I did not get rid of enough carbon dioxide liver consultant told me I would need transplant in about 15 years I had high resolution ct scan two weeks ago but no results yet .what I'm worried about is that if I need a transplant in the future I won't get one because of my breathing which does affect me every day. I read on american Pbc site that this breathing is a common problem in Pbc I was wondering does any one else suffer this breathing problem and if so what where your diagnosis .sorry this is long thanks for reading Wendy x

14 Replies

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  • Hi Wendy - I can't weigh in on the breathing issue, but was wondering what your liver doc was basing his opinion on...that you would need a transplant in 15 years? Many with PBC never need transplants and since you haven't even had a biopsy and your liver function tests are normal....I don't see how he/she can make a claim like that. Your doctor may, very well, be worrying you needlessly. Did he/she say specifically why they believed that?

    Take care,

    Karen

  • Hi Karen

    Liver doc said I was symptomatic dry eyes and dry mouth positive IGM and AMA also upper right quadrent pain and bad fatigue for about 6 years .I think that doctor meant symptomatic people progress faster and I have also read this online .my last liver function test in march said ALT was only just elevated but I don't know if ALT is related to Pbc . I was extremely upset about the 15 years as I'm now 46 thanks for your reply Wendy x

  • Hi Wendom I have never had any breathing probs because of my pbc and agree with Karen the dr should not have been negative re pbc it is the minority of people with pbc that need transplants many people live well into their 70's and 80s with this condition with few or no symptoms. Try not to worry about it and don't believe all u read on the internet a lot of it can be worst case scenario stuff. Just focus on eating a healthy balanced diet drink plenty of water avoid things that put too much pressure on liver i.e. alcohol and drugs and keep ur body and mind active and fit. Take care.

  • Hi, i have had positive AMA for 12 years, and i have elevated IGm also. My LFT's are also fine and have always beenl ok and i drink alcohol. I dont even have a liver dr. No one is particulalry worried neither am i. If my LFT's become elevated then i will stop drinking. I cant imagine that i,ll ever need a transplant. I am 44. I have many other problems (Scleroderma, Sjogrens and hypothyroididm) and get terrible fatigue so have more than my fair share. Scleroderm can affect your breathing but i,ve never heard of PBC doing that.

  • Hi inkedup

    Thanks for your reply are your liver functions tests normal because of urso or are you not taking it yet I have had positive AMA for 6 years that I know of but was only told last year that it had been positive for this long when I saw consultant they told me I could drink 7 units per week but not to drink for the sake of it whatever that meant trouble is I like a nice glass of white wine but when I do I get that awful pain under my right rib and feel pretty awful so I know for me Pbc is definetly a problem I forgot to say in my first post that I also have antibodys against my thyroid also vit d deficent and high colesterol .for me the worst symptoms I have are the awful salivary gland pain every day the breathing problems and the awful tiredness I can no longer chew food because of the awful pain I get when trying to produce saliva when I try to eat normal all my lymph nodes in my head and neck and underarms swell up and become extremely painfull my parotid glands my glands under my chin and my glands under my tonuge hurt so much I don't no what to do any more oh and I can't tolerate painkillers so put up with this pain daily but it's wearing me out pretty much had enough I'm glad to hear your liver test are ok I hope for you they stay that way but for me I don't think it will happen going for more LFTS this month also how does sjogrens affect you if you look on the sjogrens world forum many complain off shortness of Breath so I wonder of that's what's causing it and not Pbc thanks Wendy x

  • Thanks littlemo for your reply this breathing problem is really worrying me as all research I have done indicates that autoimmune can cause severe lung problems I do hope your right about living into your seventys and eightys also I watched some of the videos on American pbcers site and the liver docs on this state that a certain percentage of people with Pbc will develop lung fibrosis also I can't seem to get the fact that consultant said 15 years why would she tell me this .she told me to go just get on with my life hard to do after tellin some one that .I think about her words everyday I phoned the very next day after that consultation and spoke to a specialist liver nurse I asked her her thoughts on the 15 years and she told me she agreed with consultant and said maybe 17 years hard to get on with life with that hanging over your head Wendy x

  • I have stage two pbc and just had an open lung biopsy, april 18th. I have Usual Interstitial Pneumonitis and Chronic Fibrosis. The drs are saying an extension of the many autoimmune issues that I have. I get short of breath if I do to much, I am working on building up my lungs. The best thing I did was get of the school where I taught, away from a mold problem and sick kids. I try to stay away from sick people, stay inside when air quality is bad--I have gotten rid of most of my symptoms and feel a lot better--only problem we are living on half of the income we are used to. Health and quality of life is more important than money. Hope you feel bettet, feel free to ask me any questions about this. Have a good day.

  • medicinenet.com/primary_bil...

    I was reading this article yesterday and it mentions breathing problems with PBC. Whether it is related or not in your case I think you need to get it checked out.

    I had awful breathing problems myself a few years ago and it turned out I had suddenly become allergic to birds.

  • No i,m not on Urso. I have had lumps in my neck and i have cracks on my tongue, so i had a neck ultrasound and it showed destruction of my salivary glands consistent with Sjogrens. I also have terribly dry eyes. I also have Vit D deficiency on top of it all. I have reduced my high cholesterol since becoming a vegan.

  • Hi! Wendom -

    I understand the breathing problem quite well. I would get to the point of nearly passing out. I was diagnosed with COPD this February and am now having to use Spiriva (an inhaler) once a day and do a breathing "treatment" twice a day with Budesonide .05 inhalation therapy. I don't understand the "normal" pulmonary function test if they say that you are not getting rid of all the carbon dioxide > emptying your lungs on the exhale. We have a test where you have to "blow the monkeys off the tree" (hehehehe) that measures your ability to exhale. Did you do that one???

    Be blessed -

    GA

  • Hi tumbleweed41

    Thanks for replying I actually passed the spirometry tests where you sit at the machine and blow into them but about two months after that I had to do a bike test where they increase the resistance every few minutes and test your heart and you have to wear a mask the doctor said that at the beginning of the test my carbon dioxide level was low and as they increased resistance it stayed low the doctor said I should of been pushing out more carbon dioxide as the test got harder he is saying he thinks I have hyperventilation syndrome I don't agree my breathing is worse upon exercise but it does happen when just sitting watching tv in fact it's pretty consistent throughout each day it got worse after a chest infection one year ago and when I had the chest infection I couldn't breath and I had to use an inhaler every 30 minutes it was awful it took 18 days worth of antibiotics and my chest has never been the same since also if I breath out I have a wheeze if I laugh I go into a coughing fit my cough is very dry .but I don't cough a lot .do you mind if I ask how old you are and what your docs have said about your copd are you doing ok .sorry I didn't understand that monkey test don't think I've done that one oh and is your shortness of breath constant also I am redoing spirometry tests on 21 August also that gadget that they put on your finger says my oxygen levels are 97 sometimes 98 do I don't know what's going on I don't know if they are reliable have you had Pbc long ? Wendy x

  • LOL!! the monkey test IS the spirometry test - I just couldn't think of the name of it. lol

    I am 70 years old and was dx with AIH/PBC overlap in Aug. '07 but think I have had it for several years before that. During a lab in'99 it was found that I had an ANA of over 1200, - ANA pos. being indicative of AIH. My breathing problems really didn't start until 1 1/2 - 2 years ago and it took an ER visit to find the cause. Now if it is related to PBC, I don't know. Have never had the possibility addressed. (?) For the finger test on the oxygen, that is about all they use here any more so guess it should be reliable. hmmm?? -:) And then again - - - lol

  • Dont worry if its 97, mine's 95 and they only worry when it starts getting in the low 90's. My lung function tests are 60%. My experience of it is to stop worrying it gets you nowhere fast!

  • Hi everyone I would just like to say a big thankyou for all your replys they where much appreciated thanks again wendy x

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