Anyone out there with AIH crossover PBC? H... - PBC Foundation
Anyone out there with AIH crossover PBC? How common is remission after treatment?
I may have this, but its not yet been confirmed, I have noticed on face book that there is a AIH/PBC crossover support group. i havent accessed this as have decided I'l wait for a diagnosis before stressing over something I might not have, but they may be able to answer your question?
Good luck with this. I was in your shoes a couple of weeks ago. I will try the crossover support group online. Thank you for the info. Take care.
Hi,
I have cross over with AIH... have been on immunosupressants for many years but there has been little change in my blood tests over that time.
My specialist has never discussed cure or remission with me, athough I am aware that AIH is treatable. i always presumed it was not responding to treatment because of the PBC. Would be interested in other replies and I will talk to him again next time I am in clinic.
I was told that I would be on Budenofalk steroids for 3/4 months to get the inflammation in my liver down and my LFT's in my blood down from ALT-651 & AST-278 to normal which should be ALT-35 & AST 32. I am also on Azathioprine and when the inflammation is under control and my bloods have returned to normal the Azathioprine should maintain normal levels of LFT's with a hope of taking me off the Azathioprine at the end of 2 years to see if I can remain in remission without it. Trial and error I think but worth a shot. I am also taking Ursodeoxycholic Acid for the PBC. It would be interesting to find out what your LFT's are at? When were you diagnosed? Any major side effects with the Azahioprine?
My LFT's Were immense at diagnosis in 2001... my alkphos about 1200! But i was pregnant which also increases it. My billirubin has always been just the right side of normal except for after major surgery.. but the extensive bruising pushed that up and it soon came down. aparently my ALT is high.. but havent got the numbers to hand.
To be honest so many things affect the 'numbers' I have sort of stopped caring... I recently had my first fibroscan and the result was 11.8 or something (the avergae of 10 readings) I am still a bit unsure of what this equates to... I was told after biopsy about 6 yrs ago that I was in stage 3.. but again... to be honest i am not sure it means anything as some people go from stage 1 to needing transplant and others stay at one stage for ever...
When I fist strated taking Aza, it made me feel and be very sick... my doc told me to try to persevere for a week or so and the side effects went away... every now and agin my hair thins a lot but at present my hair is very thick with little loss.. x
it however has never dropped below 260 ish where it is currently.
I have taken Azathioprine for the last 5-6 yrs but some of that time i wasn;t compliant with my medication (long story about denial) I am also taking urso for the PBC.
I go back to see my consultant in a couple of weeks so it will be interesting to see what my bloods are sitting at as they were a lot lower when I was first diagnosed. I was talking about not taking the drugs and seeing if there was any other way to manage this condition but my consultant brought it all down to earth for me with a reality check. He said that if I had not been diagnosed and was not receiving treatement I could be dead in 3 to 4 years!!! So guess what, whatever the side effects I am taking the tablets! Too much to live for! Thank you for replying. It is good to talk to someone who has this rare crossover thing going on as well. Merry Christmas. x
hmm, my alt (i think, but forget which enzyme is which!) was 999 in the summer and has gone up to over 600 before, which enzymes do what? I have no idea whether my apparently "poor biochemistry" results are relevant to AIH or not, but would like to know which ones are?? sorry have never looked further into the AIH/pbc crossover support group on facebook,and dont know if you can find them else where. hope you get the answers you want somewhere.X out of interest what kind of symptoms to AIH have you noticed?
I originally went to my doctor with
- Disturbed Sleep
- Restless Legs
- Weight Gain
- Flushes
- Tiredness
Thought it was my thyroid playing up (I have an underactive thyroid) or the menopause. Well it did turn out to be the menopause as well. My LFT'swere high so I went for an ultrasound as they thought it maybe gallstones. That was clear but that was when they saw the problems with my liver and I was sent to a specialist and had a liver biopsy and grastroscopy and the rest is history.
It is scary that some people would not bother the doctor with such indescript symptoms but you never know! So glad I went! Have a great Christmas.
One more thing is that I am not sure what are symptoms of AIH or PBC or the drugs or just life in general? Old age does not come alone. My main complaints at the moment are that I
- am developing a wee bit of a moon face
- have an increased appetite
- indigestion
- nausea
- tiredness
I am finding myself sometimes needing a wee nap in the afternoon. How bad is that at 46yrs old! Only saving grace is that I don't have the itch. My billirubin is normal! xx
Steroids(aih) can make you swell/ puffiness up. I had to be aware of everything I ate while on them, as soon as stopped all puffiness/swelling went down. Though much more major for me was the side effect of growing excess hair, everywhere and nausea. Off them and now on azath for life. Questran for itch/pbc tried everything else all made me very I'll with so many side effects it was too much on top off my daily symptoms.
no shame in an afternoon nap!! I'm 38 and cant function without 1, now thats sad!! have recently developed really bad night sweats and trembling hands, the itch is hell, but like you apart from surgery, my bilirubin has been normal, I do feel nauseas quite often too, see the consultant in early Feb, and will no more then, wishing you and yours a hapy christmas.X
My indigestion, nauseas and reflux got so bad that I had to go back to my doctor who has now put me on Omeprazole which is helping. Hope you had a great Christmas and Happy New Year. x
I too have pbc with crossover aih.Being treated with urso for pbc but nothing as yet for aih.Diagnosis for pbc 18mths ago,aih may last year.Dr says doesnt want to put me on steroids due to sideeffects.so dont know where I go from here.DUE TO SEE CONSULTANT END OF MONTH AND WOULD LIKE A LIST A QUESTIONS TO ASK HER BUT DONT KNOW WHERE TO START.aNY SUGGESTIONS;HAPPY NEW YEEAR TO ALL.tupence
My undersatnding is that the steroids are used initially to get your LFT's under control ,which in turn will bring down the inflammation in the liver. Autoimmune suppressants are then introduced in order to suppresss your immune system so that your white blood cells will stop attacking the liver and keep the LFTs at a normal level. This should mean that the liver does not get inflammed again and damaged further and this in turn should stop cirrhosis. If you already have cirrhosis it should slow down the progression of the deterioration, as does the Urso.
Once you have achieved normal LFT's you will be weined off the steroids and continue on the autoimmune supressants for at least 2 years.
I am on Urso for the PBC and Budenofalk &Azathiprine for the AIH.
If your doctor is not wanting to put you on steroids then your LFT's must be normal. You need to ask her what your counts are.
- ALT should be about 35
- AST should be about 32 (as far as I know)
Other questions to ask are:-
1. What antibodies do you have ( typically) - positive SMA for AIH
- positive AMA for PBC
Although this is not always the case. I only have positive SMA but my biopsy came back with PBC but my bloods are indicitive of AIH.
2. Have you had a liver biopsy, if so ask if you have cirrhosis?
I have been on two different courses of steroids, Prednisolone and Budenofalk. I have found that the Budenofalk has given me a lot less side effects than the Prednisolone but you can only take the Budenofalk if you do not have cirrhosis of the liver!
3. Ask what is driving your prognosis?
My consultant told me that AIH is more serious than PBC because of the potential effects on my liver if my LFT's are not under control.
I do hope this helps and please keep me up to date on how you get on. It is so good to hear that I not the only one going through this and if I can help someone else by talking about my experience I will. I know we are alll different but hopefull if helps clarify some things for you.
GOOD LUCK. x
thankyou .Do you find youre appetite has disappeared yet no weight loss.I also feel some days as if in a fog,not quite with it.,I will let you know outcome of hospital appointment thanks again,tuppence
Neither up nor down with the appetite. Have put on weight though and have put that down to a combination of bad eating over the last wee while and as a result of the steroids as got a wee bit of a moon face as well.
Funny you should talk about the fog, only a recent thing with me. Concentration and eyes not right some days. I have had a dreadful day today. Did not have good nights sleep. Arms and legs feel like a ton weight and I keep getting a funny sensation (kinda numb/cold/tingley) all over my body. Really emotional today as well and feel a bit anxious. Dreadful this morning but bit better this afternoon and now feel quite dreadful again. Bit of a rollercoaster ride!
I was just saying to my husband last night that I have been feeling great over the last few weeks and have not had that "brick wall feeling" and then today is crap! Should not have tempted fate. So frustrating.
I see my consultatnt tomorrow morning. Good luck when your appt comes around. x
It's amazing reading someone's symptoms and it's like déjà vu. In a weird way it's made me feel better that I'm not the only one but crap too
I saw my consultant today and he reconed that the symptoms I was describing yesterday were from a virus. He was not convinced that they are related to the PBC/AIH. I kind of beg to differ when other suffers have the same symptoms as me. I don't think they really know enough about it to be able to say what are symptoms and what are not. It's a very grey area. At the end of the day we all have to just deal with what comes along in the best possible way. Glad my post made you feel a bit better. I feel a bit better today. Take care.
My LFT's are back to normal with the steroids/aza. He has upped my aza to 100mg and if my bloods stay level in 6 weeks he will wein me off the steroids and put my aza up to 150mg and that will be for the next 2 years keeping an eye on my LFT's. He said that he would try and take me off aza after 2 yrs and see what happens. Worth a try. 40% of patients can come off aza altogether and keep well. We'll cross that bridge when we come to it.
Hi Jtxx,pleased LFT'sback to normal and that you feel a little better today.Youre not Irish by any chance,I may be wrong but the wee seems to suggest you are.I feel like everthing aches today and Im strugling to do my chores ie feed the hens.Fortunately retired so am able to have couch potatoe days.These seem to become more frequent now the colder weather here.Sometimes I think its all in my mind.However must stay positive as being negative does not help.Thank you for sharing with me.No longer feel so alone with it.Take care Tupence xx
I am Scottish tuppence and you can drop me a wee line anytime. If you go into your messages at the top of the page you can send me a wee note anytime you feel like a wee chat. Take care. Just listen to your body. I do that and it seems to work for me. Hope to hear from you soon. xx
Latest from me is that I am being weaned off the Budenofalk, one tablet less every two months (I was really hoping to get off the steroids sooner than that but need to do it slowly - should take 4 months to get off them). Also Azathioprine upped to 150mg for at least 2 years. Just want to get on with my life as best I can. Hope everyone is as well as they can be. Remember be positive. x
