Told I have pbc/aih overlap syndrome today! - PBC Foundation

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Told I have pbc/aih overlap syndrome today!

Ktb32 profile image
7 Replies

Hi everyone, I'm very new to this! Although I have been reading some of your posts over the last few months to get advice! I was diagnosed with pbc 2 years ago (when i was 30) and was suddenly taken very ill a few weeks ago with jaundice, vomiting, nausea, loss of appetite and generally feeling unwell. After a 2 week stint in hospital and a liver biopsy I have been given the news that I have pbc/aih overlap syndrome. My dr says not to worry!! We can control it with prednisone, azathioprine and calcium and vit d! Feeling optimistic and a little overwhelmed :-\

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7 Replies
Susanagnes profile image
Susanagnes

Hi. I have had a similar hapening. Having had PBC for about 30 years with no adverse reactions I experienced an overlap syndrome last July. I now have PBC with overlap autoimmune hepatitis. I have been treated with prednisolone sterioids, Tacrolimus, Ursodeoxycholice acid tablets (been on these for years) and Vit D supplements. The medication seems to have worked well and my liver function blood tests have improved. I am shortly to be on a lower dose of the steroids and go on to azathioprine. I have to say I am pleased in one way, but a little nervous about the azathioprine and its side effects. I am going to investigate this medication further. However, if anyone has any experience of it, I would be pleased to hear about it. I do hope you get on ok and I am sure you will.

Ktb32 profile image
Ktb32

Hi, it's so nice to here positive feedback! I'm beeing monitored at the moment & my enzymes levels are being checked to make sure I'm on the right dose of azathioprine, so weekly visits to the hospital over the next few weeks are in order. I have been told about the 3 main side effects of azathioprine, being pancreatitis, abdominal pain, sickness and diarrhoea! (Nice!) but the dr has told me that if I have any of these side effects then I can come straight off the medication and there is something else I can try? Fingers crossed it will all go smoothly. I have found that since the aih, the chronic itching from the pbc has completely stopped so that has been a huge relief!.

sandgroundergirl profile image
sandgroundergirl

Hi

Me too, pbc with aih overlap. ( no itching tho ) But at the moment I am feeling fine. I am still managing to work my butt off 5 days a week 12 hours a day ! Although when I do get in from work I normally doze off after my tea. I am on Urso and nothing else yet. Lately my wrist joint and my knees and feet keep burning and aching. Sometimes in bed I wake up in the middle of the night and my knee has locked, very painful til it clicks back into position. I keep putting it off going to the doctors to tell him as I keep thinking it will go alright soon. Wishful thinking. Dont worry too much, we get by. Reading what everyone puts on here is so helpful and re assuring.

Ktb32 profile image
Ktb32

Hi, thanks for all the positive feedback it's reassuring to know that there are other people out there with the same condition!! I must admit this site has been a blessing, being able to read people's blogs and find out more about the condition has really helped me put everything into perspective. Thanks

Magnolia profile image
Magnolia

Hi all, I also have to deal with a knee and back problem, along with the PBC. It is so hard to get up from a low sofa and the potty. So...I bought a 4 inch riser to sit on top of the potty. That really helped that problem. :)

Magnolia

Jtxx profile image
Jtxx

I have had AIH/PBC overlap syndrome for about 2yrs now. I am now taking Urso for PBC (1000mg) and Azathioprine for AIH (100mg). Get that brick wall feeling on occasions when I just need to sleep (normally sleep for 12hrs when it happens) but on the whole I am keeping well. Re steroids: I started on Prednisolone but not good on side effects. Then changed to Budenofalk which was a lot better (you can only use Budenofalk if you don't have any cirrhosis). Might be worth asking your doctor about this. It worked better for me. We all want to avoid side effects! Take care. X

Junolee profile image
Junolee

Hi, I am on imuran (azathioprine) for about 6/7 months. Have been on prednisolone since last June when diagnosed slowly weaned off now on 5mg. Urso, calcium also since last June. Iron for a while and other stuff as I needed it. I am doing well, they are happy. Last Consultants appointment was February next one July, had bloods done a few weeks back - haven't heard back so presume ok :)

Initially the azathioprine 50mg made me sick so started taking it at night before bed and I am ok now. No other symptoms. Work full time and travel a lot so fingers crossed. Also on a tablet every month for osteoporosis. Seeing an Endocrinologist tomorrow.

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