So I've been diagnosed with PBC, have started Urso and am going back to see my consultant on Tuesday where he will have the results of blood tests (pre-urso), bone density scan and liver biopsy. I have a thousand questions (I'm trying to repress the urge to grab him by the tie and screech "AM I DYING, WHEN WILL I NEED A LIVER TRANSPLANT?!?" at him), but find the whole situation very overwhelming. I'm going to try and write a list so I don't just turn into a quivering heap. What do people think the real questions are? Apart from some discomfort on upper right side (decreasing with URSO) I don't have any extreme fatigue / itching / other symptoms at the moment.
Thanks in advance for your support.
Suzie
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Suziebeau
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Welcome to the PBC forum. Like the rest of us, we absolutely dislike our diagnosis, but for many of us, we appreciate having one another to lean on and share experiences. So that said, we're glad you've joined us.
My DX came in the spring 2013, and I was shocked to learn of PBC (I also have AIH), but by the same token, I knew something wasn't right and couldn't quite pinpoint why. My rheumatologist captured my elevated LFTs and sent me to the Gastroenterologist, who on the first visit, tested me for AMA (it's positive) and then forwarded me to an ultrasound and liver biopsy.
For me, doing a lot of online research before my follow up visits helped me to formulate questions and I am forever writing my next set of questions for the next 6 month visit. I think the most important thing I found wasn't so much asking about the dieases (it affects us all quite differently and there's a bit of general info online), but I spent time asking how to best make myself comfortable e.g. which diets to try, supplements to use, types of exercise I can do, which follow up tests I would need, are their local support groups etc. I decided not to focus on staging (I wasn't staged due to having AIH and PBC), or asking 'how much time' --- no one knows and we all progress differently.
Here's what worked: I was obese and my doctor suggested going Gluten Free because I had issues with bloating, pain, swallowing, IBS, etc. Almost immediately, I lost 44 lbs and realized how much better I felt. Too, because of fatigue, he conducted a vitamin D test which was extremely low and by taking an 8 week course of 50,000 units each, it helped [temporarily] relieve my fatigue. Additionally, he recommended walking --- not only to help the weight loss, but because it is low impact and would help move the lymph fluid through my system and keep me 'in shape'. I also added calcium (I just turned 50), biotin (having hair loss), milk thistle (helps to detoxiify the liver), tumeric (for inflammation) and he prescribed Omneprazole for heartburn and stomach issues. I feel much better now and my LFTs dropped back into the normal range ---- even lower than the past five years since I dropped alcohol, gluten and cut back sugar and fatty foods (though I don't know which of these actually affects our numbers.) To date, I am NOT taking Urso for the PBC or Corticosteroids for the AIH since my #'s continue to be normal.
While I greatly appreciate my Gastroenterologist, I feel I get more out of asking questions here from those who experience this disease with me, rather than depending on someone who has limited exposure to PBC (only 2 PBC patients in a field of 8 doctors) and answers Q's based on textbook information.
I don't know that I've been of much help, but do wish you all the best with your visit on Tuesday.
I think you need to write a list if any question that crosses your mind. You have a right to know the answers and information is power. You consultant will want to reassure you. Then join the pbc foundation website. Read through their info and give us on here a shout out from there. Try not to stress. It's not a death sentence. The pbc foundation runs self management workshops which I highly recommend.
Thanks both of you for your helpful advice and support. It does make sense to concentrate or at least try to on the things that I can do something about to keep more healthy and feeling better. I will try and calm down and make a list and also get on with some research on things I can do for myself.
Hi Suzie I have found the PBC foundation in Edinburgh very useful. They will also give you a list of other people with PBC in your area that you can contact if you wish. We are all different and have different symptons or no symptons. Different things work for different people. I have made a lot of friends with PBC and have 3 friends who have had transplants. They have never looked back. When I was initially diagnosed the first thing I asked my consultant was am I going to die. He was able to reassure me by drawing a line and telling me where I was on the line. He also said if I reached the other end, that was not a death sentence but time to be assessed for transplant. He said most people die with PBC not from it. Having met 3 people who have been through the transplant procedure, it is not something I think of with dread. I was scared initially when diagnosed in 2009. Nowadays I hardly think about my PBC (I also have AIH). What works for me is having the PBC Foundation, who publish a very useful magazine 4 times a year called The Bear Facts magazine. I also find it comforting to have my online contact with friends who also have PBC who I also meet up with a few times a year. It helps me to listen to others describing their symptoms so if the same thing crops up with me, I know it is normal .... if that makes sense. Forums like this are also a good source of information. I wouldn't recommend just googlling any old site, they can give inaccurate information. I take URSO for the PBC and mercaptopurine (immunosuppresants) for the AIH. I also take Pantaprozole for acid reflux. I have regular blood tests (3 monthly) and see the consultant twice a year. The blood tests monitor my liver function, platelets, vitamin D amongst other things. Regular monitoring I think is the norm in most parts of the country. There are quite a lot of people with PBC so you are not alone and there is a huge age range too. Most of us are female too, doesn't seem to affect many men. Please don't worry and if I can help further then please get in touch. Take care
It is a shock when first diagnosed with PBC. I was diagnosed 13 years ago. I am not prescribed Urso. I have systemic sclerosis and now balance issues . ( was tested positive for Romberg's ) I have so many various other problems which give me more problems than my Liver; and I have read so many posts here saying PBC is something we are likely to die with rather than from, that I hardly think about it any more. I am 64 which means I am too old to be afforded the gift of a liver transplant. So It is something I can do nothing about whatever happens now. This sounds defeatist but I mean that I accept the reality of the implications.
I hope you find a lot of your questions answered on this site. Not all can be as we are all affected differently by Scleroderma and whilst some of us deteriorate rapidly others do not. As you are probably aware already, it is impossible to make predictions about this and other related symptoms. But try not to worry to excess. I know it is easier said than done. I tell myself that children suffer it and I have at least had a very active life for many years.
I wish you well.
Hello Suziebeau.
I think it can take some time to digest that you do have PBC. I was diagnosed Dec 2010 and although I suspected I might have PBC months prior to being informed I had, I had to accept it eventually and try to get on with life best I could.
My consultant who took the AMA at my first hospital appt early Nov 2010, he sent my result to the GP who informed me early Dec I had PBC and prescribed urso. I didn't have a biopsy due to abnormal LFTs, GGT and also symptons of itching and fatigue at the time (fatigue vanished long since) along with the 'high titre' of AMAs found. (My ANA that I had same time showed to be negative.)
I returned to the consultant 2mths after starting urso and he filled me in a bit about it but didn't delve too far into the future which I think can be a good thing really. All he did end with, "It can lead to liver transplant" but I already had read about that (my husband didn't know, I never told him, the hospital consultant informed him this).
I know I asked him if I should change anything dietary and he said, 'the liver loves calories'. Didn't mention alcohol as he knew for my GP I was not much of an alcohol drinker and after my first abnormal LFT early 2010 I never bothered again, still don't.
Meanwhile if you think of anything you feel you would like to ask the consultant then jot it down on a sheet of paper and take that in. As you have already mentioned doing, it is a good idea.
I prefer not to think about the future myself and what this could lead to so it is something I'd not ask, purely because it may never come to that and why worry about something that may happen? To me it a stand against having PBC. In the early days of PBC I did think about everything I was doing, how I could help myself but slowly over the last 3yrs that I have been diagnosed with it, I just find it monotonous and only get a bit nerve-wracked when it comes to going for the repeat bloods in case they are slightly higher than last time. Other than that I just crack on with living day-to-day despite having the itch at night that is a damn nuisance.
Given you have had a biopsy and if you are in the USA stages of PBC tend to be mentioned. I have to say I do not go in for finding out myself. I am just not interested. I go with how I feel day-to-day, some days I don't feel I've done well for some reason and others I feel on top of the world. I know if I was offered (well informed) regards liver biopsy I would refuse one as to me regardless of what it can perhaps tell a doctor, I can't see it will help all that much anyway.
Thanks everyone, I do try to get on with things and most days I'm ok but sometimes it just creeps up on me and gets me really upset. I am in the uk, but have health insurance through my work, so at the moment I'm seeing the consultant privately, hence the biopsy etc. I think he's getting the lot done before I get referred to him on the nhs! I don't think the insurance will cover the long term monitoring, but that's fine, I live near a really good hospital with a specialist liver unit. Thanks so much everyone for all your help and good advice. It is wonderful to have your support, it means a huge amount. I've got young kids and my husband is not taking this well, so I'm trying to put up a brave face at home, which makes your support all the more valuable.
Hi Suzie. Just adding my support from Down Under. You sound like you are doing a wonderful job of managing to take in this news and with young children I think the shock of diagnosis is intensified. I was diagnosed 10 years ago at 38 when the youngest of my 4 children was only 5. I really appreciate how frightening the news can be. Like the others have said it can take time to process everything but once you come to grips with it I'm sure you will sail ahead. Everyone has a different journey on the PBC path so know that yours will be unique and not compare it with others. There is significant research into this disease now and many drug trials running which all help to raise the profile of PBC. Good luck for Tuesday Suzie and as the others have said, access the PBC foundation.
I also wanted to comment that the newly updated PBCers Organization website launched today and has a segment for questions to ask your doctor, which can be found here. This is really a thorough list --- many things which I haven't thought of and will ask on my next visit. pbcers.org/support/question...
All I will add to what has already been said is along with your list, take someone with you for support and to act as your ears or just to write notes. My mind was in absolute turmoil the day I went for my results and thank goodness my sister came with me for support, I could barely speak let alone listen and she was able to speak up for me when I got upset and reminded me later of details that I had forgotten or simply just not heard.
Hi there everyone, all went well with the consultant, very early stage, some inflammatory cells but no fibrosis, good bone density, and am currently asymptomatic so all he can say really is keep taking the Urso and try and relax. I'm seeing him in 2 months to see what if any effect the urso is having on my bloods. Thereafter 6 monthly.
One thing though, he didn't mention it in the consultation, but said in the letter to my gp that I would need endoscopy in the next few months to check if there any varioces that were developing. Haven't heard that one before! I will do my research but has anyone heard of this, or even (I hope not) suffer from them themselves?
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