Can anyone shed some positivity?

Hi,

I am just wondering if anyone has had PBC for a long time without advancing or without many symptoms? Everything I read is so negative, and I just want to know if there are people with PBC that aren't so affected? If so, what sort of lifestyle do you live?

Thanks in advance!

29 Replies

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  • I was diagnosed in 2009. I am fairly symptom free after responding well to urso. I have a positive mental attitude which I think helps. I try not to overdose on carbs and sugar because that causes me joint pain and increased fatigue. I have eliminated foods from my diet to see what helps etc. Everyone is unique so need to find what works for you.

  • I don't agree that everything is so negative, I see lots of questions being asked from people trying to get to grips with it, mainly cause we're not told enough about what to expect by the medical community & because we are actually on the face if it experiencing different things at different times as PBC is a bit random. But with each others help we're getting there & living life as full as we individually can. I'm very symptomatic, but my actual liver isn't damaged, it just takes a bit of juggling & getting used to, a bit like a new job, house or other life changer. Once you've accepted that in your head life goes on & enjoyment continues. X

  • Thanks for your response. I'm not implying everyone is negative here specifically. Just in my research, in different groups that Ive joined, etc, there are a lot of depressing stories. It makes me sad and I don't want to lose hope. I'm trying so hard to stay positive. I'm newly diagnosed so it's a lot to process at first.

  • Please don't loose hope, but I know how hard it is when first diagnosed & I sympathise with you totally. I've just had my 6 th month check up all be it 3 months late & my specialist said life expectancy should be as it would be for normal people of my age but it will be at a slower pace. So to make the most of that I retire next Thursday so I can enjoy the slower relaxing time I have. Xx

  • Hi I was diagnosed 22 years ago and have rarely had any symptoms whatsoever. I take Ursodial 250mg twice a day. Had an ultrasound done last year, ( First one in many years) and everything looks okay. Hardly any change since being diagnosed. I think that's really positive 😄

  • That is so great. I'm so happy to hear that.

  • Hi. I was diagnosed in late 1990ies. Cant remember date. My liver is still very good but like ax1880 and Teddy bear i have been symptomatic too but with life style changes as well as diet modification i am living a pretty good life still. I think also that perspective is relative to each individual. You can approach any illness with a positive or negative attitude and each of us judge our own life with our own life experiences. Most days despite tendon pain i have a reasonable day and that gives me hope and strength for the next day. I look forward to many things still and am quite sure i dont wish to change my life too much. I have just started on LDN and i am very hopeful for if not a cure at least some improvements. Every day medical improvements are being made and there is a tremendous amount of research being done and a tireless group of people either fundraising or researching. Whats not to be positive about? Hope you can get your head around this. Its not a death sentence any more and we are being told now we will die with this disease and not from it. Also i feel the longer you are on Urso the less symptoms you experience because one the medication works and two you learn what is best for your health.

  • Hello wilmahair,

    I started Ldn 7 weeks ago. I can't take urso. It made me sick. But my doctor is gonna have me try it again here soon. I'll be starting at a lower dose and working up to my proper dose. As far as the Ldn goes, I really feel like it's giving me energy. I'm in early stages right now but I'm scared of progressing fast because I can't take urso. I hope it works and I can tolerate it the 2nd time around. How did you hear about Ldn?

    Stella

  • Hello Stella. I dont remember but i was looking at the time for an alternative to pain meds which i am allergic to many of. I think i just googled pain relief alternitives. I just know i printed it off and naively trotted off to my local gp who was a locom who knew nothing about it and put me on Gabopanthen instead. Have gained 6 + kg since being on the Gabopanthen. Any way my sister and i decided to start seeing a holistic dr about 8 months later and after several visits my sister was put on it. I was still taking targin at that stage but my next visit i had decided i wanted to be weened off targin and then be able to trial the LDN. Last dr appointment which i do by phone because i am about 1,500 km from this dr i asked her if i could trial it and luckily she was very excited to say yes. I was thrilled because everything i have read tells me its got to help me.

    Who put you on to the LDN Stella and other than energy have you felt any other effects?

    I think now i am on it i am going to try weening off the Gabopanthen because i still have the nerve pain i went on it for in the first place.

    I am hopefull it will help with my lichen slerosis as well as my fibromyalgia. Nothing else helps and i would love to have some energy again so i can start to walk seeing the temps are in 30ies as apposed to in the 40ies. Also would love to swim again without triggering my shoulder pain.

    Anyway thanks for your communication and please keep me posted as to how you are getting along.

    I do hope you can eventually tolerate ursofalk as it is a very good drug for us PBCians.

  • Hello Wilmahair,

    I have 4 different doctors. My hepatologist, my gastrointerologist, my Natruopath, and a functional medicine M.D. This last one is the one who "I" spoke too about trying Ldn. She had one other patient on it for MS. I'm her first PBC patient.

    So far the only symptoms I have had is dry eyes and fatigue. I recently have been having aches and stiffness.

    I've experience no real side effects from the Ldn at all. I dream more. But, that's all. I do have anxiety. I battle that for now. Nothing really bad, just super annoying. I need to exercise.

    Thanks, you keep in touch too.

    Stella

  • I got diagnosed 12years ago i dont have many symptoms im not on medication i dont eat spicy foods sometimes i get a pain under my ribbs where the liver is and that can last for days. Once i worked out things to eat had plenty of rest when my body was telling me to slow down it was ok.

  • That pain under your ribs can be gallstones

  • Why aren't you on meds? Have you been checked out regularly to keep an eye on progression? I'm not on meds either. For now. Gonna try urso again in about a week or 2. Hopefully it won't make me sick this time around.

    Stella

  • Hi. I was diagnosed in 2003 and I am still exactly as I was then, symptom free, with no progression of the disease. I get 6 monthly checkups at the hospital and I take Urso every day and apart from that life is quite normal!

    I was told I was more likely to die with it than from it. -)

  • That is wonderful!

    Stella

  • Me too i was diagnosed 8 years ago aged 26, approx 3 years after my first child was born. I was put in urso 750mg per day and fi gets crossed i am ok! A bit itchy sometimes but not unbearable like when i was at the beginning. Take it day as it comes, i thought the worst and it took a long time to get to grips with the whole thing but u DO get there and realise not much has changed prior to diagnosis. I hope this helps a little. Take care :) x

  • Thanks for responding. Did you have more children? I have a young son and just went through having multiple miscarriages prior to being diagnosed. I want another child but now fear because of this, it's not in the cards for us.

  • I was diagnosed 3 months after the birth of my son (who is now 14) I lost a baby at 17 weeks but nobody said it was anything to do with my PBC. I was only put on Urso after I'd finished trying for any more babies (which never happened) so I think thats the only thing you have to be wary of. Go for it, PBC is not a death sentence.

  • Hello KristinPelletier.

    I started to itch early 2010 when I was 45. By December that year I was diagnosed with PBC and by that time I wasn't far off becoming 47. I've not long gone 6 years diagnosed but it is almost 7yrs since I started to itch.

    I decided long since that I'd deal with things as and when and meanwhile get on with my life and enjoy it as the things I might spend time worrying about might never happen.

    I can't say I've probably not advanced a bit with PBC. My bloods did come down in the first 2 years of taking the urso but then they slowed down and started going up a bit at blood check, then down again making a wavy line on a graph but they're not overly bad.

    The only sympton I still have is itching but it is not almost 24hrs a day like 2010 and part of 2011. I itch late at night (around 11p.m) and then by 6a.m. it has vanished. Fatigue I had in 2010 vanished at some point in 2011 and I've not had that since but I do get tired some afternoons due to broken sleep at night.

    I continue to eat as healthily as possible. I have found that it is best to have a cut off from daily eating so I dont' tend to eat anything after 7p.m. Odd times I might have a cup of tea and dry biscuit around 9p.m. if I fancy. I find I can eat like a horse at breakfast and during the morning and even lunchtime I can eat well but by 4p.m. I find I don't feel very hungry at all so don't have a large evening meal. The one thing I have found since I started itching all those years ago, I find sometimes during the night when I am fidgeting due to itching (usually lower torso, feet and toes) I start feeling like I am empty and my tummy can start to rumble. I think I do burn a lot of calories as I seem to be on the go most of the waking day and also during the night. I find if I sit for a certain length of time in the day even I start to feel prickly so I do feel better being on the move.

  • I know what you mean, every morning I get these e mails from here. I'm going to unsubscribe, it does me know good at all. All negative x

  • Ok just read all this. You've cheered me up a bit. I'm new

  • Kristin,

    20 years dx, asymptomatic, only take Urso. Fatigue 2 years ago but its gone away since I took early retirement. My only symptom is anxiety that I might need a liver transplant some day. I had elevated enzymes but they are only alittleovernormal now

  • Yes i went on to have another child and was monitored more carefully i.e bloods taken and more scans but this gave me peace of mind and reassured me that everything was ok! :) i did itch coming up to the end of my pregnancy but again it wasnt intolerable. I forgot to mention i also take a low dose statin as i have high cholesterol. This pbc seems to affect all age groups and is becoming more prevalent in younger people. I sincerely hope a cure will be found 1 day soon! All the best xx

  • Hi, I was diagnosed about 10 years ago, I started on Urso but couldn't take it, I stopped it years ago and my liver results are always normal, I don't have any other symptoms apart from the fatigue and itchy toes, I am one of those people who just live a normal life, I eat what I want,( I've never drank though) I smoke a little, I use all the shampoos, hair dye perfume, I wear make up, this PBC my rule the way my body works but it will not rule the way I look, I have control over that, not PBC, so I just get on with living, works for me. I was diagnosed by biopsy. So there is some good news as well as the not so good.

  • Hi Kristen,

    I know I have had PBC for 10 years but as my consultant told me I may have had it for many years more than that! Unless you have a Liver Function blood test you are never likely to know and if you are symptom free then you are unlikely to go for a blood test. I have been on URSO for 7 years now and still lucky enough to be fairly symptom free. I do get tired but pace myself, I took early retirement from work but would have probably retired anyway (now 62 - retired at 60)! I am lucky enough not to suffer badly from the "itch" just feel it when I get stressed and get some pain at times under my ribs on the right side. I lead a totally normal life for a woman of my age and often think I am a lot more active than my friends! PBC is manageable with medication. Stay positive. Life is good. X

  • Sorry to sound ignorant but what is LDN?

    Thanks in advance for any responses.

  • Please google it. Its full name is Low Dose Naltrexone. It has been hailed as a wonder drug for many Auto Immune diseases. There is so much to tell you that it would be easier and of more benefit to you if you googled it.

    I dont think i could do it justice if i tried to describe it.

  • Hi wilmahair,

    Thankyou for your reply. It was a help just to know what the abbreviation meant. Wishing you well.

    SALLAM

  • I was diagnosed in February 2013 and my last screening last month was everything normal no advancement no symptoms I have other issues not connected to pbc. I only had the itching before diagnosis and urso is working fine for me I eat as normal I don't drink but I was going off drinking before. I have found that 1 drink is like having to many.

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