Hi everyone

Hi, new to the forum. My husband has been 'ill' for approx two years, investigations (slow NHS) have finally given diagnosis of AMA positive through blood tests, also he is having complex partial seizures several times a day, he had been diagnosed with diabetes, and has recently had lumbar puncture to check for other auto-immune problems (I think!) but we are still waiting for the results. He has been bleeding from his back passage and occasionally vomits blood. He is currently waiting to see a Gasterenterologist in a couple of weeks time. He had a signoidoscopy two weeks ago in which they removed polyps and did some pile banding, but his bleeding continues. He has not yet seen any form of specialist re PBC so do not know what stage he is at, but concerned about the bleeding. Is it normal to bleed with PBC? And also are you more susceptible to other auto-immune diseases with PBC? does anyone know whether there is a connection with the seizures? His symptoms in relation to the PBC are excessive fatigue, itching, red rash, and he suddenly cannot tolerate any alcohol whatsoever, it makes him feel so ill, even just a small amount. Any advice would be appreciated.

4 Replies

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  • Hi Caffeywaffy,

    I'm sorry to hear that your husband is having such a hard time.

    I've personally never heard of seizures being affiliated with PBC, however, I have heard of bleeding with it. When it does occur (due to PBC), it is something they call portal hypertension, which is an increase in the pressure within the portal vein (the vein that carries blood from the digestive organs to the liver) due to blockage of blood flow throughout the liver. This increased pressure in the portal vein causes the development of large, swollen veins (varices) within the esophagus and stomach. The varices are fragile and can rupture easily, resulting in blood loss. Of course, there are plenty of other reasonable explanations for the bleeding that may have nothing to do with PBC....but, in answer to your question, development of varices can happen with this particular condition.

    The fatigue, alcohol intolerance and itching are all pretty common....I haven't heard of the red rash before, but maybe someone else on the forum can chime in.

    As far as developing other autoimmune diseases, I have heard that this can happen as well. In my case, I currently have three (although some say PBC is not autoimmune, I disagree).

    Regardless, not everyone develops multiple autoimmune diseases and lots of folks live long, relatively normal lives with PBC.

    I hope you and your husband get to the bottom of exactly what is going on so that he can get the help he needs to feel better. Keep us posted!

    Take care,

    Karen

  • Hi Sorry to hear its taking so long to get properly diagnosed.

    I would suggest if he vomits blood go straight to A&E when it happens. They should admit him and you should get your answers quicker. Although bleeding can occur with PBC, it should always be treated.

    Im afraid it is quite common to develop other autoimmune conditions alongside PBC as well, speaking for myself they are always testing for things like, diabetes, thyroid etc.

    As Karen said the fatigue, itching and intolerance to alcohol are very common symtoms of PBC. They will give your husband something for the itching if it becomes intolerable; it is not a symtom I have so others will be able to advise you better on that one.

    Good luck to you both - hopefully your wait for answers wont be too much longer.

  • I agree with the comments above but please contact the PBC Foundation in Edinburgh who can answer all your questions who have a wealth of informtion and are always happy to help. I now have 4 Autoimmune conditions but I am doing ok. Take care. X

  • Go to A&E straight away, tell them he has a liver problem, you need specialist advice for this one. This happened to our son.

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