PBC/AIH, early stage of fibrosis confused.

[wongie]

Just seen my gastro doc on thursday for results of my biopsy. Confirmed I have pbc/aih. I asked him what state my liver is in and he said I am at early stage of fibrosis. He has reduced my urso, because I was feeling really sick, gums were swelling and put half a stone on. He said if my bloods are still raised next time I have them checked in six weeks, he would advise me to go on steroids. Really not sure what this all means to be honest. I asked him for a report or something so I know whats what, but he said he was going to speak to the guy who did my biopsy for some more detailed information. Thought he would have known all that before I went to see him.

[zipitydoo]

Isnt it awful how they throw you a scrap of information then make you wait and worry about the next bit.

Like you said he should have already spoken to him before your appointment then he would have the full picture.

I am presuming that the biopsy might have shown slight fibrosis from what he has said to you but that doesnt really represent the whole liver. I would try not to worry until you have seen him again and he has all the info.

let us know how you go on please.

[wongie in reply to zipitydoo]

Hi zipitydoo, Thanks. The frustrating thing is you sit looking at them waiting for answers and they just do a silly grin. I go in there asking loads of questions and come out just as confused. Your right about not worrying about it, lifes too short. I'll let you know how I get on.

[Celiaa in reply to zipitydoo]

I agree, I was on my own when I was told on 25th July 2012. I have only had blood tests.

My own gp said there has been a problem with me since 2006 but she has not acted on it. I have had to find information out for myself.

Appears mine maybe because i have a thyroid problem and pernicious anaemia.

[zipitydoo in reply to Celiaa]

Hi,

Just wondering if the thyroid and the anaemia were auto immune as I know some are and they do seem to like going together.

[zipitydoo]

Its a shame we cant post the questions off to them and give them time to find out the answers before our appointments.......bet in most cases we would still get the silly grin.

[wongie]

Your right zipitydoo. The sad thing is we shouldn't have to do that. I think before being diagnosed I was very naive. I assumed that if you became ill the doctors would try to find a diagnosis, then they would try and treat you and hopefully give a bit of sypathy or explain things to you. This has been an eye opener for me. I don't usually question things but believe me from now on I'm not giving up until my doctor gives me the information I deserve.

[zipitydoo in reply to wongie]

The thing is they dont know enough about it to answer a lot of the questions.

My first question would be ....and how is it going to effect me......the truth is they dont know. You speak to 20 pbc sufferer`s and although they suffer with the same thing each one is different.

At least on here we can talk about the problems we do have so we know we arnt alone and hopefully it will help both us and other sufferers in the future.

[Lindilou]

Hi Wongie,

As zipitydoo said, the biopsy only shows part of the liver, I had a liver biopsy at the end of last year and it showed little holes (doctors words) but he did reassure me and say that it was only a tiny section they were looking at. The results were passed around 3 hospitals for their opinions and my consultant said that it looks like AIH (in addition to PBC). He prescribed steroids which was 9 weeks ago, during my time on steroids he told me to get bloods done so he could monitor me. He called me at home a few weeks ago and told me to start weaning off as they were not making any difference. Back to the drawing board then I think I will write a list of questions for the next appointment, however I find the support and information from this site amazing much better than the hospital

Just out of interest what dose are you on for urso?

xx

[wongie in reply to Lindilou]

Yes zipitydoo, your right, everyone is different and hopefully if we keep asking and pushing for information and help, eventually something more will be done. I think what annoys me the most what comes out of the doctors mouth is "Its autoimune", just because its another autoimune disease shouldn't make it okay, because its not okay. Hope I don't sound angry, bitter and twisted. I am angry about not knowing whats going on in my own body, I feel that I have no control at the moment.

Lindilou, I bet you were mortified when he said you have little holes in your liver? How did you feel on steroids, only the doc wants me to go on them in the near future, but I said I didn't want to because my sister was on them and she put loads of weight on and ended up feeling worse.

I was on 300mg of urso, one in morning and one at night, but he told me to break them in half, so I have half in a morning and half at night.

[Lindilou]

Must admit when he said little holes I think he saw my face and then followed with but the liver is a large organ blah blah and reassured me. Im on 250mg urso morning and night but lucky not to have had any side effects

As for the steroids, ask how long your doctor wants you to go on them for, maybe he will suggest a trial period and monitor you? They have made me put on weight, although I had lost quite a bit before going on the them, nearly back to what i was when i went on my diet

Steroids were not too terrible but I did get snappy and a bit restless and my concerntration was not good at times. Doctor told me to avoid salt as it will make you retain water, if you crave sweet go for fruit and drink plenty of water and maybe increase or take up some form of excercise.

Hope you get on ok with your next appointment, fingers crossed xxx

[zipitydoo]

Those urso doses sound low to me. Do you have problems with taking it?

Just going by the guide lines of 13/15mg per kg of weight a day.

[wongie in reply to zipitydoo]

Hi, I was on 300mg twice a day. Doc told me to half the tablets because I put half a stone on, had swollen gums and was feeling really sick. Now in a couple of weeks, lost 3 pound, no swollen gums and no sickness. Something obviously not right with the tablets.

[zipitydoo]

It does sound like there is something in it that doesnt suit you. I have learnt that different companies that make tablets put different fillers in so it might be one of the fillers that is not suiting you rather than the urso itself. It could be worth asking if you could try another brand to see if it suited you any better.