Pbc

Jen11804 3 minutes ago

I'm new here. I was diagnosed with pbc in the past few weeks. I've had itching of my arm for month and unusually tired. I've always been active and now it seems I don't have the energy or drive to bother. I'm currently taking 2000 mg of urso daily and I feel ok. I mean no real side affects as of yet. Except for itching which I'm not sure is the urso or the pbc. Just wondering if anyone has any further information in this disease. My husband seems to think I'm tsking urso now do I will be fine. Should I be worried? I sometimes feel people don't understand and think oh u r on this meds u will be fine. It gets me aggravated and I feel like going in a bubble sometimes. Anyone's thoughts would be appreciated.

39 Replies

oldestnewest
  • Hi Jen.dont waste your time googling info.contact Pbc foundation edinborough for their free info pack.it will tell you and your family(and most likely your doctors

  • I'm not sure I understand what your saying.

    Could u explain further?

  • Sorry Jen only half my message got through for some reason.what I intended to say was don't scare yourself googling some outdated facts on the net.get in touch with Pbc foundation edinborough who will send you a fantastic information pack.you can even phone them for advice.the pack is helpful for gp's too who don't seem to know anything about Pbc.very helpful for family and friends too.they will also send quarterly magazines to you with up to date information.good luck with your Pbc and try not to worry x

  • This is only happening in short bursts tonight

  • Sorry. What is happening in short bursts??

  • Hello Jen.every time I type something into you for some reason it gets wiped.i tried to send you a lengthy reply saying not to worry and enjoy your life .i hope this time you get the message x

  • Lol. It's ok. I thought I was starting to lose my mind reading your messages thinking I didn't understand. Thanks. I am trying to enjoy my life and be thankful everyday

    :)

  • Thank you cazz22. I appreciate the information. :)

  • Hi Jen, try not to worry. Get some good information for you and your husband. Here is a link to the PBC foundation. Their info is good BUT they do not include information on cognitive dysfunction and joint and bone pain. They are also common PBC symptoms so I'm not sure why the foundation don't include those symptoms. However, their info is generally good.

    Tessa

    pbcfoundation.org.uk/Home/C...

  • Thank. U Tessa.

    I will look into it :)

  • Your welcome. URSO is a treatment aimed at slowing the progression of damage to the bile ducts in the liver. It us not known if it works or not. Just because you are taking URSO does not mean you are 'fixed'. You have to learn to live with and manage your symptoms. Your husband needs to know more xx

  • Yes Tessa that is what I told him. Urso doesn't work for everyone. I tell him he is in denial and he needs more information. Although he tells me to stop reading. That's not going to happen. !! I think personally he doesn't want all the information because he is afraid of what he might find. He tells me to be positive which I'm trying but he also needs to face reality of the possibility of what might be yet to come

  • Yes, learning more helps you to manage better I think. URSO may help to slow the progression, or not, but it doesn't treat the symptoms such as fatigue which can be debilitating. I don't want to paint a dark picture, in fact I'm much more positive now that I've learnt more. My fatigue is often debilitating but I'm learning to pace myself etc. please try not to worry. People with PBC can and do manage, lots don't need transplant and most die with PBC and not of PBC at a ripe old age

  • I think the spoon theory is useful. Useful for loved ones too.

    butyoudontlooksick.com/wpre...

    Tessa

  • That's thinking positive Tessa. We coukd all give up but what woukd be the point. Just do what u can do when u can do it abd be thankful it hasn't defeated us :)

  • Exactly, thanks Jen

  • Love that! Shared it. Its so true!

  • Hard to think positive sometimes. But if we don't we can all get depressed to the point where we make ourselves sick. I'm enjoying life to the fullest and I suggest everyone else do too!! :). :)

  • Apologies, the revised patient information leaflet does list joint pain.

  • Hi Jen I have been taking urso for 18 months now since I was diagnosed with PBC there is some weeks when i have energy and for the last three weeks have had none at all

  • Hi rubber glove

    That's too bad ! :(.

    I have the mist energy in the morning if I have a good night sleep. I'm usually crashing mid afternoon but I made a promise to myself today. I'm going to not let this ruin my life. I am going to enjoy every second I hsbe to enjoy my family , friends, work. ( I love my job). If it requires me to do what I need in the morning than that is what I will do. I leave for Newfoundland in three days to see my mother and father and grandfather abd my husbands in laws. I'm gone for 3 weeks. I haven't seen them in over 2 years. I'm going to enjoy every moment as it were my last. :)

  • Good for you thats the way to look at it ,I was told by my doctor to forget that I have it lol Enjoy your holiday

  • Good for you thats the way to look at it ,I was told by my doctor to forget that I have it lol Enjoy your holiday

  • Lol. It's hard to do sometimes but I think it will be hopefully the last thing on my mind. :)

  • Hello Jen11804.

    I don't want to disillusion your husband here but I was diagnosed with PBC Dec 2010 after starting to itch early 2010. At the time I was also fatigued but never thought anything of it as I working over the allotted full-time hours in my employment. I was 46 at the time, 50 now.

    It took the NHS system a further 9 months for me to be diagnosed with PBC and meanwhile I continued to itch but I did start feeling less fatigued as by that time I was taking stock more of myself even though I thought I was pretty healthy to start with never having gone to a GP with any sickness since 1999.

    I started on urso Dec 2010 and my first LFTs (liver function test) following this were done 2mths later early 2011. I was found to have LFTs that had started to drop. I continued itching as it seems that urso might not rid one of the itch though in a few it can. The itch did over time settle somewhat and I have only itched from later night since 2011 but unbroken sleep if I wake during the night and then start to itch does cause tiredness from around 4p.m. onwards I find these days. I do suspect that urso can also cause the itch but I think in this event you'd not know if you have the itch of PBC as that and also fatigue are the 2 symptons that everyone who acquires with PBC can have. I have not suffered from fatigue now from sometime 2011 and at present still don't.

    My own husband took some sinking in of PBC and in the early days he didn't seem to take it seriously. I stumbled across PBC from library books and then saw the PBC Foundation website several months prior to being diagnoses but never mentioned at all to any doctor as I hoped I'd not have it. The hospital doctor 2 months after making the diagnosis when I saw him, he explained what PBC was briefly and I left out that PBC could eventually lead to transplant and the hospital doctor said this to my husband who then did start to take more stock of it.

    Unfortunately the rest of my family (with the exception of my daughter who is an ex-veterinary nurse pinched the PBC Foundation binder when I was on holiday to read herself), seem to think that just pop the tablet (urso) daily and you are fine. It doesn't work like that. I think with PBC just because we walk around looking quite ok as I do it's just thought it is something trivial. I don't really tell anyone, I can't be thinking about explaining that C word that is connected with it as I've come across a few of the medics in the last 4yrs who have presumed I am an ex-drinker! (I was never much more than the odd social drinker, birthdays, etc prior to PBC.)

    I've been diagnosed 4yrs later 2014 but started itching March 2010 so I've now been over 4yrs with this and I'm doing ok, no other symptons as yet alongside the itch.

    You need time to absorb it all and start moving on with the urso and for me I know after the first LFTs following diagnosis and starting urso with the difference in readings as mine was considerably better (and still maintains a good level) you feel much more different and then as time moves on and you know you are still chugging along you can continue with life somewhat. I wasn't sure at the beginning if I'd still be around 3yrs down the line but I am and I'm better than I was back during 2010. What being diagnosed with PBC does is give you a different angle to life. I tell myself I am still here, life is for living and I am going to get on. I had so much pain in life prior to 2010 as I was widowed aged 29 and had 2 young children to raise on my own as my mother had died a few years previously. I met my current husband through writing letters whilst he was in the army during the mid-1990s and we finally met up 12yrs later and then 6mths later were married in May 2009. We had only been married 10mths when I started with the itch so we have all the more reason to enjoy life together now and intend to do so as much as we can.

    There is a lot of things out there online that I find can be rather worrying with regards to PBC and for me I've never been interested in acquiring a stage I have of PBC, not interested (I never had a liver biopsy as I had symptons, abnormal LFTs and also when I had AMA (antibodies) check was diagnosed with PBC then). I decided long since that I'd hit things as they come and not worry about what could be as it might never be. I'm more than likely to continue life with this itch as irritating as it is but still live life quite normally and eventually dying of something else other than the PBC.

    Liver North publish their newsletters online, I'll post the link here and you could also same time request their dvd that they mail out for free. PBC Foundation website has been updated I found so I'll also post their link on here too.

    livernorth.org.uk/

    pbcfoundation.org.uk/

    Click Publications on Liver North for their newsletter.s

  • Wow!! Thanks so much for sharing. Yes I'm trying to continue to enjoy my life as well. My daughter got sick a few months prior and was hospitalized because of a misdiagnosis. She had surgery and is now better. She is only 16. I was on a full workout regime before that time abd had lost it. I wanted to be here for her every sec I coukd. My husband works out if town 2 weeks out if the month so I'm kinda like a part time mom. I also have a 11 yr okd daughter. So between work and running them around they r both competitive dancers I had my hands full. I just started this morning running agsin. I'm going to try to keep a positive attitude and get back into my routine and enjoy life whatever it may bring me!! :)

  • Did you have a liver biopsy? Thats the only way to diagnose pbc to know fore sure . Urso is supposed to help the bile ducts work better and possibly slow down the progression of the disease. It will never be cured. You just have to treat the symptoms . Good luck . Hope feeling well .I wes diagnosed 5 years ago . Had NO symptoms . Routine labwork showed elevated LFT's and they started investigating further.

  • My enzynes were elevated for 5 years. My dr didn't seems concerned. Last year I visited a hormonal dr and he saw my elevated enzymes. Ordered blood work again then told me to c my reg dr and for him to refer me to a liver specialist. I did that and my dr still didn't seem concerned said I will run tests again u r feeling fine that's all that matters. What a genius!! ( sarcasm) anyways my enzymes came back even higher so he said well it's probably gonna take about 3 months to get in to c one so I thought so? Anyways my gastro suspected pbc because I had fatigue itching and the enzymes elevated so he ran a special test that shows if u have AMA which I did. So he did r see a reason to run a biopsy right now. I see him in October to c of urso is working to lower my enzymes if it doesn't then it's time for the biopsy. If it does he isn't going to bother right now

  • Oh and from the research I've don't u don't have to have a liver biopsy to confirm pbc. Your dr may want to get one done to see what stage u r at but if it's early and no other symptoms tell him that liver biopsy isn't necessary

  • I think my husband finally gets the gravity of it because my mother had the disease and others. But I still don't think he totally understands, neither do most people that have always been healthy. I was one of those people too, so I try not to be too hard on them. The thing is, I have felt this way for nearly 10 years and only recently gotten my diagnosis. So my husband is used to my fatigue coming and going.

  • My husband used to say" your tired again"?? After being in bed all night and he thinking I got probably 8 hrs of sleep. He doesn't say anything anymore just go take a nap. Lol. He's starting to come around but same as yours don't think he really understands. He needs to read up on it and get more educated to really know what's involved in this disease .

  • Yeah, I know what you mean. We live in town and my husband wishes we lived in the country. We have a nice little back yard patio and he loves to sit out there on nice days or evenings. Even though its just sitting and relaxing out there, there are some nights (like I imagine tonight will be) that I can't even do that. I just want to lounge in my comfy chair and kind of cat nap. I then still get up and go to bed around 8 or 9. I just got over a long week and weekend (fun stuff) but I definitely used up all my "spoons" and borrowed about two weeks worth in the process. I am wiped today and can hardly get through this work day. I just got back from lunch and the thought of 3.5 more hours is about enough to make me cry. I can do it, but it will be super hard for me.

  • One of my employees couldn't believe that. She said, "its just sitting" like how could I not do that. Well its still "doing" something. I have to have complete rest when I feel like this. Now if I can get a nap when I first get home, I would be able to do it. But I have lots of other things to do too, like cleaning, laundry etc. I have to choose what I can do, I can't do all of it. Sometimes I can do all of it, but after a weekend like this one, there is just no way.

  • Just one thing at a time. You can only do what your body allows u to do. Unless someone is in your shoes they have no idea so don't take any criticism personally. They truly don't understand. Listen to your body and if u need to nap then nap. :)

  • Hi, Jen11804! Like you, I am newly diagnosed and I take 2000 mg urso a day as well. I have been on the urso for about 40 days now. The itching and tiredness are part of the disease. Urso is a natural bile acid and helps with digestion so that you get the benefit of the food you eat. I am trying a combination of vitamins and minerals in addition to dietary changes to more raw vegetables and as little processed food as I can (my husband is the cook here and sometimes his interpretation of what is processed food and what is ok differs from mine :-) I am finding that most people have never heard of this disease, much less understand its effects on an individual. You will find that the people here are very supportive and helpful. With time and learning about your condition, the feeling of wanting to withdraw may diminish...it has for me. Take the time you need to rest, but live life fully to the best of your ability. You may need to cut yourself some slack and recognize that your activity level has a new normal.

  • Yes I know Simba. It's all new to me. Just a few weeks of being diagnosed. At least I know now I'm not crazy with the itching. Lol. Well it's one day at a time that's for sure. I'm learning a lot from this site it's very informative. Te more I read the more I understand. It's truly a disease unless u have it no one truly understands :)

  • Ironic that we just had this conversation. I feel horrible today and I spoke to my Dad this morning who is normally pretty understanding, but he is also elderly and sometimes forgets. He said "what is this, why do you feel bad all the time?" I could have jumped through the phone and killed him. I have to remember that he forgets things sometimes, but he was like this with my mom too when she was ill. He had cancer a few years back, but not very bad, and he has never been really sick in his life ever. This wasn't a day I wanted to have to hear that. Oh well.

  • I'm sorry to hear that. Hopefully tomorrow will be better. :)). Do what u can. Rest when u need to. We are not super human and can only do what our body allows us to do!! Think positive. Stay strong!!

  • The PBC foundation are great, always there when you have a question or a worry. As a young man with PBC I'm definitely in a minority, but I hope I can assure you life continues after diagnosis. When I was diagnosed I was so fatigued, and quite ill, I felt that the bottom had dropped out of my world (that was 8 years ago).

    I've changed my outlook on life since then and changed my employment. I've found that stress makes a difference (worse) and general fitness (better). I still get fatigued but I don't fight it any more, I work full time, but over 4 days then have 4 off, I find things better to manage that way.

    I hope that you can find the information and support that you need through everyone on here.

    Dave

You may also like...