primary biliary cirrhosis/ autoimmune hepatitis lapover syndrome

[cocobailey]

Diagnosed with pbc / autoimmune hepatitis lapover syndrome . Anyone else have it and what is your treatment ? I have been taking urso doil but recent biopsy results prompting my doc to possibly add immunosupressants .

[Ktb32]

Hi, I was diagnosed with pbc 3 years ago aged 30! And 1 year ago with overlapping AIH, at first it was really daunting but I have a good consultant and we've found the right medication that seems to work for me, at the moment I'm on 750mg of urso and 50mg of mercaptopurine so far so good. I know it's a bit scary but hang on in there and I find this site an absolute god send as it's full of people going through the same kinds of things! Hope this helps!!!! But just remember that everybody's condition & symptoms are totally different

[Mower1234 in reply to Ktb32]

I have pbc I was diagnosed in 1999 they said I could have had it up to 10 years prior to that. I was on 3 urso a day now on 5 a day. I also have under active thyroid due to it & on 40 mg beta blockers a day to slow my heart rate down as the vein from my throat to my stomach is swollen as the blood is pumping the I have pbc I was diagnosed in 1999 they said I could have had it up to 10 years prior to that. I was on 3 urso a day now on 5 a day. I also have under active thyroid due to it & on 40 my beta blockers a day to slow my heart rate down as the vein from my throat to my stomach is swollen as the blood is pumping the blood back up. Sorry can't remember all the technical terms blood back up. Sorry can't remember all the technical terms I am always tired but every so often I get so tired it's a struggle to do any thing so I just rest. What is overlapping AIH?. I am due to see my specialist on Wednesday I always look forward to that.

Denise Evans

[doublewhammy]

Hi, also have ai/pbc. Diagnosed a year ago. Having opposite treatment to you. Dtr leaving pbc for now and we are concentrating on aih which I understand is a more aggressive disease. So started onlots of prednisolone and slowly dropped them to one a day and azathioprine ( immune suppressents). Its worked really well and my lft readings have been in the normal range since starting.

Suffer from fatigue although sees better on sunny days. Also joint muscle pain which may be a vit d problem even though I am on calcium/ vit d tablets. My biggest problem was the azathioprine worked so well my immune system is suppressed so I was catching all bugs at the primary school I worked at and was off at least a week each term. So made lifestyle choice and am studying at home (this is for me happening at an opportune time, if it had been 5 years ago not possible).

Have my days when I feel down but mostly ok.

I was diagnosed at 46 also. There is an aih support group in the uk autoimmunehepatitis.org.uk they have lots of info.

[janey_babs]

Hiya, I have overlap. The Urso didn't work for me so I was put on steroids and calcium, then azathioprine(immunosuppressant). The steroids were then slowly withdraw. Just on the azathioprine now. Liver is under control. Side effects of all drugs mentioned are bad but worth it. I have since developed raynaulds too though.

[Axl888]

I was diagnosed with PBC/AIH in September 2009. I was given Urso for the PBC and put on 8 steroids a day gradually reducing over a period of several months. Once it was under control I was changed to azathaprine but that did not suit me so now I have mercatopurine. Everything is under control and I feel better now than I did 10 years ago when I suffered terribly from fatigue but didn't know why. Now I still get tired don't get me wrong but I am able to work full time (albeit in a school with holidays), exercise (run and walk) and cope with help to do the housework from hubby. Don't despair although it effects all of us in different ways. Look for what works for you to make your life bearable. I don't let PBC take over my life. Most of my friends have forgotton I have a problem because I have learnt that however well meaning people are initially they get fed up after a bit with something they don't understand. Especially as people are always telling me I look well!!!!! I have my PBC family and sites such as this one to support and be supported. Good luck X

[ZiggyBean]

I have PBC/AIH overlap. I take urso 1200 mg daily and 50mg of azothioprine (immunosuppressent). Doing really well with both all my liver enzymes are normal with a slight elevation of alphaphosphate

[Alley27]

Hi I have overlap. I currently take 1000 mg urso per day, am on prednisolone steroids 5 mg ( started on 35 mg) and I also take 50 mg mercaptopurine. The usual medication to take along with pred and urso is Azathioprine, but unfortunately I was allergic to it so had to be put on the mercaptopurine instead. My bloods were normal for the last three times so I am happy about that.

xx conniefused

[tuppence]

I was diagnosed 4 years ago with pbc/aih. Now have autoimmune arthritis anamea and a hgh platelet level.Prescribed Urso 1000mg daily and iron tablets.Look anf feel very well apart from fatigue some days and pain from joints.in fact feel better than 2 years ago.I live in Spain where im well cared by health servce.Fortunately I am retired so can havea fatigue when necessary not usually more than 2'3 days a month. So don't despair and take care of your self.Good luck

[jimshe]

Hi there have just been diagnosed with overlap too seems I have had last fifteen years , prescribed ursodeoxycholic 250 mg just coming to end of first month on them .so far so good . have all the usual so tired but can't sleep tummy grumblings have osteo Arthritis in all my joints as well . but so glad a there's people out there that know what we are going through we are not on our own