Do you think your Pbc is worse since being diagnosed?

Hi all,

Haven't posted in a long time. Dx with Pbc 8 months ago and been on urso 7 months. Bloods have gone back to normal.

My mind, soul and body have not since learning about this disease.

I worry consistently. Driving myself insane. I have the support of my husband and daughters. However my Mother, sisters and nieces seem to think it's slow to progress there fore nothing wrong with me!

I suffer with pain in the liver area and back pain. Stiffness and ache in the bones at times. Also fatigue. This is the worst of them all. I'm lucky at the moment I can stay home. My husband is USAF/DOD and I'm British and been very lucky to be stationed back here in UK for another 2 years. I'm loving it but know will have to move back.

I haven't seen any hepatologist yet. The military are maintaining it with urso and blood work and scan very six months. I think it's time I should see one? Wonder if it's worth me signing back up for the NHS?

I'm scared, worrying and honestly don't know what direction to turn in. I'm now changing my diet habits. Low fat high fiber.

I'm not looking for sympathy from mother etc but acknowledge it. It is real.

Any advise my sisters would help greatly.

Hugs and love. X

11 Replies

  • Have you joined the PBC Foundation, link at the top of the page, where you will get accurate information?

    You are having good care and being well monitored. Worry is one of the worse thing for PBC, everyone will tell you that although it is difficult not to when you feel you don`t know what is happening. The foundation have some good leaflets you can give to your family so they understand PBC . But in the end it comes down to you taking care of yourself and managing your tiredness by taking a few short cuts and some sneaky rests etc.

    Read some of the past Blogs. There are a lot of older people with PBC leading (with a few adjustments) perfectly normal lives. I am 74, have PBC and expect to have many, many more years ahead of me.

  • Thank you so much for your response.

    I think getting my head around it and stop worrying is the answer.

    I am telling myself what can the worrying change? Nowt eh!!! Just more pain and grief.

    Yes. On of the first things I did was join the foundation. Was sent a package and receive bear fact sheet monthly.

    How long have you been diagnosed? You are living life huh. I need to get off my pity pot and live.

    I'm eating better and do rest when I can. I need to lose the weight. Hardest part.

    THanks for caring.

    Anne. X

  • Good girl! Think in a positive light - Look a women coming down the street and think to yourself." I wonder if she has something she doesn`t know about and won`t find out until it is too late. I know I have PBC and am being monitored and getting treatment now to give me the chance of a good life. I am the lucky one"

    I was diagnosed in 2000 when checking a heart murmur. Like you I was devastated to be told I had a terminal illness. What rubbish! Many, many people with PBC will die with it not from it.

    Good luck trying to lose some weight. My daughter is doing it now by cutting out those little extras and walking someone`s dog. It is hard but if you try you will start to feel you are getting your life back on track and get out and enjoy it.

  • Hi Geordielass

    I have two sisters who totally ignore my PBC, they also were in denial when my mother's dementia really became apparent. Some people are just not able to deal with it. For many PBC is slow to progress and you seem to be well looked after by the military. I am now 63 and was diagnosed some 8 years ago. I was lucky that I was able to give up work and with a change of lifestyle I have done very well over those past few years. Unfortunately because of a stressful family situation a couple of the symptoms have become worse so from experience I can honestly say that getting stressed out does not help the PBC.

    Can your military advisor recommend you to an NHS specialist? May be you can get a second opinion however from the little knowledge that I have it seems that each individual has different symptoms and combinations of those symptoms and we have to learn how we can best deal with those problems.

    Some alternative therapies can be soothing, I am trying to teach myself meditation to still the mind and ignore the itching - sometimes it works other times............................./ :-)

    best wishes

  • I was like you making myself ill but I don't worry now my specialist said my is not progressive stop worrying. I have had this for approx. 12 years. You are not alone with this condition it is all over the world don't read into it to much. enjoy each day as it comes.

  • Hi Geordielasstx

    I have had PBC for the past 4 years. I am at the moment taking urso. I do not worry about it at all as the GP told me most likely I would die with it and not from it. I have never bothered with blood readings and just leave that up to the professionals EG. consultant. I did have a liver biopsy and have yearly scans. The only thing I do seem to suffer badly from is the itch. I have tried various things but nothing seems to help so guess I will have to put up with it. Fatigue is common so just pace yourself. Regarding the weight. I have managed to loose half a stone and hope to loose more. I just did that by cutting down and also cutting out bread, butter, cheese, biscuits etc. I mainly eat loads of veg, chicken and pasta all in smaller amounts than I used to and for breakfast I have porridge. I hope this helps you but do not worry about it. I do not get much support at home so find this site and the PBC Foundation great. Just try and enjoy life with your loving family.

    I will try and not put the weight back on over Xmas now.!!! ha ha. x

  • Awwww thank you all so very much. I feel humbled and feel more relaxed.

    My best friend Beverly is my listener. I don't know what I would do with out her.

    I'm starting the gym on the 28th. Treadmill to begin. I'm cutting out the white starches. Will have pasta whole grain. See if this also helps with my gastroparesis.

    I love the theory on picture that person walking towards you and they may have a disease they don't know about and may be to late. Oidra I think it was you. ? I'm going to use this theory and put it in my back pocket.

    Yes, unfortunately if family remain with the ostrich effect and head in sand then it will be very long, dark and lonely. I've has to put up with a lot of crap as I'm a very loving generous soul and tend to be used.

    My mother is quite sick back in USA. They think she has some autoimmune disease with her liver but not Pbc. She is still in denial about me and herself.

    That's ok. Maybe this is her way of coping.

    I'm going to try and put Pbc in the corner of the room and ignore it. Also teaching myself meditation. Also doing soft yoga. Cant move the next day ha ha.

    Back at t next week have my daughter recovering from nasal surgery.

    Thank you again. Merry Christmas to all my sisters x.

  • Happy Christmas Geordielass - your great attitude will get you through from Diane

  • Hello Geordielasstx.

    You seem to be doing really well taking urso. My LFTs (liver function test bloods) haven't gone back to normal and I've been taking urso now for 4yrs. My LFTs have slowly kept dropping though and are exceptionally good to what they were in 2010. I was 46 at diagnosis, now 50.

    I think 8 months is a pretty short time to actually come to terms with the fact that you have PBC and that it is something that currenty there is no cure for plus we have no idea which way it will go for any of us really. You sound like you are doing great currently. It has been known for some with PBC who get a return to a normal LFT result continually that their PBC might have temporarily halted but there's no way of knowing . But normal LFTs are surely a great sign. Even though you are back to normal at rpesent with the LFTs you will have to continue to take the urso (there's an article from Prof David from Newcastle in the latest Bear Facts, a questions page. He mentions the LFts and continuing to take urso once a diagnosis of PBC has been defined regardless of their return to normality.

    Now due to your return to normal LFTs you will more than likely be considered in some sort of safe zone and it is standard to be monitored at intervals. 6 months doesn't sound a bad thing. Back in 2010 in March when I started to itch, it took a further 9 months tor eceive a diagnosis of PBC and in that time every time I had bloods done (more frequently to rule this and that out but still had LFTs done - I got all the results in print-out following daignosis), they were continuing to rise and it was a case of the wheels of the NHS turn very slowly and I had to just wait. My first hospital appointment took 13wks to reach. I expect had the LFTs been on a more dangerous level I might have been seen quicker perhaps?

    A scan can't show up PBC but it can show how the liver is actually doing. Changes can be seen so I'd not worry there. My first and only scan so far that I've had showed me to have a pretty normal looking liver and also clear bile ducts with no other surrounding rogan problem.

    I did attend outpatients at local hospital at intervals but in Oct 2011 I got to feeling that I was wasting my time as I was doing rpetty well almost a year on from urso and also I was finding for what I was going for, the length it too to walk there (over an hour) and all the waiting about for a few minutes of the doctor's time, I asked him to discharge me. He had a brief chat about it and agreed. It was on a condition that in future if needs be I would be referred back. I am glad I did ask for the discharge as 3 yrs on I am in a better condition with better LFTs and had no problems with PBC (except the itch I still have, my only sympton these days. I did used to have fatigue but that vanished at some point during 2011). I can't really say my GPs have been much use but I think partly as they are pretty ignorant abotu certain things and I also get a bit of a distinct feeling that because I have something they can't really do much about, they aren't that interested.

    My family, most of them, have all the same thoghts that you are encountering. We just pop a pill dialy and we are fine, it is all kept at bay. It is good if it is like that and can continue but for some of us it can go the other way and become a serious issue. My husband himself thoguht it was nothing back in 2010. I had read about PBC in library books and online but never mentioned to the GP, I waited until the hospital doctor took the AMA blood test when I saw him and diagnosed me. I never informed my husband of a possible future outcome, I left that to the hospital doctor on my first visit following his diagnosis (he told the GP to inform me I had PBC and give me urso). My husband did sit up when the doctor finsihed with his explanation of PBC with the words 'liver transplant'

    My husband was in the armed forces and served overseas but he never lived there as his tours were not over 2yrs in length. That is how we originally linked up in 1995, he was stationed overseas and popped an ad in the local paper asking for penfriend of which was at the time one of my interests (still is). He reckons the army hospitals are better than what we have received in the NHS. My motehr-in-law currently lives in Malaga and she gets treat at a military hospital out there and she says it is better than when she came over here 2yrs ago and ended up being hospitalised (she has COPD).

    Fatigue unfortunately is a sympton of PBC and though I suffered fro it in 2010, I thought nothing of it as I was working over the allotted full-time week in a demanding job at the time. It was the itch that took me to the GP and the road to PBC. I don't know what is worse, itching or fatigue or both together. I have trouble sleeping for long periods at night due to itching at night so later in the day I just feel tired. It is a vicious unbreakable circle I think.

    I know myself I have made changes since 2010 and I think it does pay. I personally think that all we can do once we are diagnosed with PBC is take extra special care of ourselves even though I and probably everyone else on here thought the same too. Low fat diet can be good I suppose as bile deals with fats. I've had no problem taking urso except for heartburn, a bit of bloating and also I thought I itched more in the first few months on urso but since no problems except I do have odd bouts of constipation I never experienced pre-urso. I deal with that by more fibre in my diet.

    My philosophy now I have PBC is that I enjoy life when I can, do things that I feel I can and crack on as we never know what is round the corner. It is more probable that majority of us are going to die having PBC but not due to it. Like me as you start to clock up a year and then another, you do feel that bit bolder and by that time you will know your limitations on certain things. I know I do.

    Hope you keep on as you are, that is with normal LFTs and please keep posting how you are doing over time.

    PS Noticed Oidra has mentioned the PBC Foundation. There is also another site LiverNorth that I have found pretty informative too. They issue newsletters and they are online for you to see as well as you might like to receive their free copy of the PBC DVD (I got mine nearly 3yrs ago now I think). LiverNorth covers other liver conditions but it does seem to feature mroe PBC in it I find. I'll pop the link on for you...

    (The Publications section on the left will take you to the newsletters.)

  • Hi Geordielassy

    First of all stop worrying! You have been daignosed with PBC but it is not a death sentence! You are unlikely to be disabled or prevented from living a relatively normal life. You may feel more tired than most at times and aching bones and joints together with itching (for some) are not unusual. Your blood results will vary-ignore it. How do I know? I was diagnosed 21 years ago and have been on Urso ever since. Things are starting to progress a bit more quickly now and I have Portal hypertension and have recently had oesophageal varices ligated. I have climbed mountains (literally) and exercised regularly and spent weeks away from home-usually without travel insurance, although I would not advise anyone else to try this!I worked ( nursing) till I was 60. I am now 69. It is practically impossible for other people to understand an illness that they cannot see. In my own case I always look as if I have just returned from the Med!-also common in PBC. Try not to expect too much from the family although you could supply them with leaflets on PBC and LiverNorth have a very helpful and informative DVD they could watch. Grab life and live it to the full. No-one ever knows what time they may have-don't waste yours worrying!

  • I tried to read all the replies, but didn't make it through. I just wanted to give you my two cents, because I totally get what you are talking about. I get the "you look so well" all the time too. I use nice make up and take care of myself, so I do look ok to most people. Also, people that see you all the time just get used to how you act and look, so its incremental to them and they get accustomed to it. I find that when I see people I haven't seen in a while, I almost get the look like, wow you've changed. I know that is probably just me, because they always tell me I look good (I actually may look better than I did now that I'm on Urso, )but I think I've aged with this.

    Its hard sometimes to realize you have something going on. When I feel normal and have good days, the only reminder I have is the meds I take. It could be easy to forget something is inside me attacking my liver. Then I have a few days where I either eat things I shouldn't be, or I have a stressful time and I feel bad or my side starts to hurt and then I remember. I have been down a little the past couple of days feeling sorry that I may not make old bones. But usually I get over it. I think Christmas makes us think about these things too. Feel free to PM me anytime if you need another "sympathetic" ear :)

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