Bad days

[Macushla]

Hi everyone, am kinda new at this. Was just recently diagnosed with pbc and still on a learning curve. Am on urso and was told it was for the rest of my life. Is it normal to have great days, where I feel nothing is wrong, and then have a really bad day..or two? The fatigue is the worst for me so far, and upset stomach. Am reaching out because I don't find there is much understanding of this disease. Thanks for listening!

[Poppygayle]

Hi Macushla lots of people with pbc do suffer from the symptoms you describe the best advise I can give you is to learn to listen to your body when having good days try not to over do things pace your self when the tiredness hits make sure you rest and recharge your batteries it does help a little with the fatigue also have your your iron & thyroid checked to make sure other things are not contributing to your tiredness . Contact the pbc foundation they will will be able to answer any questions you have and give you all the correct information you need . As for the upset tummy make sure you eat something with the urso it helps . Xx

[Tigger858]

Hi Macushla this is absolutely my experience of PBC plus a few other negative symptoms. Your right regarding people's understanding of this condition, they don't get it. Only someone who has PBC understands, however even then we all seem to have different experiences. Some people have more severe symptoms than others. I think it's important to understand how it affects you personally and deal with it the best way for you. Poppygayle has given good advice, when my fatigue is bad I do as little as possible, when I feel good I do whatever I want to do.

You should also try to pace yourself on good days, I however find this difficult as I tend to overdo it and pay for it later lol. Keep your chin up, enjoy your good days and rest on your bad days. X

[butterflyEi]

Hi Macushla

I have been diagnosed for nearly 10 years now, mostly I get the itching and tiredness but latterly I get stomach problems and stiffness in the legs as well and then I will go for a period where nothing seems to bother me. The PBC foundation is a good contact to have and I have found the good people on HealthUnlocked have a great insight into this disorder.

[Bogeeman]

I have been diagnosed with autoimmune Hepatitus - I have a decades worth of ailments that I believe were all precursors - sever depression , IBS, Sleep Apnea, Osteoarthragia -, chronic joint pain , debilitating fatigue and a s

[Hidden]

Hello Macushla.

I started itching early 2010 before I was 45. By December 2010 at aged 46 I was diagnosed with PBC and started on urso. I was fatigued during that year due to working over the allotted full-time hours in a demanding job so felt all the more tired whilst on-going bloods were done and also a scan. I was diagnosed by symptons, abnormal LFTs and GGT and also I was found to have a 'high titre of AMAs'.

I stumbled across PBC months prior to diagnosis but just shrugged bad thoughts off thinking it was due to overwork, running about all the time, sleeping a lot when not working and not eating that good for awhile.

I think when you are told there is something that you have that will never go away due to currently no cure and that you will have to deal with it for life - I too was informed I'd ahve to take urso for life (unless something else was found to succeed it) - it takes time to sink in as you are stepping into the unknown.

I remember walking back from the local GP surgery after he was informed by the hospital consultant to tell me his diagnosis and prescribe urso, my husband of 18mths with me who I gave the option that night to leave. It wasn't easy starting to get on with life as we didn't know how it would go and wondered if I'd be around a few years later. I resolved with myself at the time to get on with life, my husband said he was going nowhere and that we'd hve to start to muddle through. We made a few changes and then started this slightly different life.

I had a few side-effects with the urso early days. I thought the itching was worse for awhile, I got a bit of tummy bloating and also heartburn. I was sceptical about urso but 2mths later when I had a repeat blood test and saw a much improved LFT (liver function test) and GGT reading I decided to press on. The heartburn and bloating vanished by the 3rd month on urso. I did start becoming a bit constipated after taking urso and odd times I do feel like that, I never did pre-urso.

I have been up and down with the itching. I then started having odd days where I didn't itch but that has been some time now since that has occurred. I tend to just itch at night and by 5a.m. it has gone. I often find I wake at night and then struggle to return to sleep due to itching. The fatigue left me at some point during 2011.

When you reach the 1st year from diagnosis and then continue to clock up another year (I am 4yrs diagnosed next week, itched for nearly 5) you start to relax a bit if your LFTs and GGT are doing ok (mine have been up and down a bit since but nothing major, at the moment I am on a good run with them).

I was never informed to alter my diet at diagnosis, didn't drink much prior to my first abnormal LFT in 2010 but chose to cease even an odd glass of something from the first abnormal LFT. I prefer to have quality in food as opposed to quantity, eat well (even though I thought I did pre-PBC diagnosis).

Though I know what PBC could eventually lead to I choose to shut off. I prefer to deal with the here and now and my husband and I choose to get out and about when we can and enjoy the free time we have together.

Yes you do have good days and you do have bad days. I think that is the norm with a lot of health conditions that are to be dealt with long-term. I know myself if I didn't itch I'd not even think I had PBC but unfortunately for myself feeling it every day does remind me. I think part of the secret of riding over the bad days is thinking of something shortly ahead that you are looking forward to doing and grab the good days by the horns.

[Macushla in reply to Hidden]

I just wanted to thank you for all the insight and support! I am trying to learn all I can, and reading about other people's journey with this disease is so helpful and comforting as I find it is a 'lonely' disease, difficult for others to understand. Again, thank you!

[Hidden in reply to Macushla]

Hello again Macushla.

Well as it is known on here with quite a few I am myself an advocate of trying to get on with life despite now having PBC. I have been diagnosed with PBC 4yrs tomorrow and I find it a bit hard to believe myself that 4yrs ago I did wonder if I would be around much longer following. But I am here and I am in much better condition and spirits than I was at the beginning.

I chose to take control of most of it myself and I have found I seem to pose a bit of a problem to a doctor by doing so but that is me. I chose to discuss with the hospital consultant a year after diagnosis outpatient discharge for the foreseeable future and got him to agree. 3yrs on from that I am glad that I did do as there has been no significant changes for the worst, I've just continued to have slow but improving LFTs.

I get the feeling that the few GPs I've seen in the last few yrs aren't that keen that it is on them but I try to keep away if I can and this year I've been put on 6 monthly bloods due to my LFTs going slightly up from previous and then up slightly again next check a few months later and then a distinct drop. I;ve been like this since the following year after diagnosis so it had put me on an even keel readings-wise. Hoping to remain on 6 monthly bloods as 3 months up until the beginning of this year seemed to come round everso quickly.

I have found the system of prescriptions and also having LFTs, getting the results, seeing a GP at intervals quite a maze at times and one would think a patient with no problems at the time would be able to have a much better organised system. Doesn't seem to work like that. In the last 4yrs I've actually found the medical profession to be more stressing than having the PBC at the best of times.

Yes the one thing that I find can be more isolating is the fact that I don't know anyone as in the flesh so-to-speak who also has PBC. I'd never heard of it until a few months prior to my diagnosis. I have only come across the hospital doctor who has dealt with PBC patients and also one nurse in surgery who has heard of it but it is a learning curve for the GPs so far that I have seen. Only found the one I see now who has taken soem interst in finding out more.

I think until one of the so-called celebrities out there develops PBC (and not the one the tennis player had, PSC) and then shouts about it from the rooftops I think we will remain a bit more in the dark on understanding of it.

[Macushla]

Thank you so much for the info and support. It helps to know there are others out there who actually understand what is going on, even if we can all be so different. I am gathering all the info I can and trying to absorb it all. But I know that I'm a tough ol' bird and will make it through

[liver-bird]

PBC is a mysterious illness which most people know nothing about and that is why the PBC Foundation and this support group are so valuable.

I was diagnosed last March and have good days and some days when I have no energy so I rest then and do things on the good days - its about listening to your body and pacing yourself. I too get symptoms including upset tummies.

I find it very difficult to know whether PBC/urso is causing the symptoms I get or whether they are stress related and I would have them anyway - it`s tempting to blame everything on PBC. Like you, I am on a learning curve. Good luck and keep in touch. Diane

[Macushla in reply to liver-bird]

Thank you for your thoughts. We seem to be in a similar situation, being relatively recently diagnosed. I am constantly wondering if I'm having side effects of the urso, if it's the pbc or stress. I keep telling myself not to use the pbc as an excuse. Some days are great and then, like today, I had no energy whatsoever. I guess, with time, we will both learn more about it and ways to cope. Things could be worse!

I don't have much family here and it's the hardest thing to explain to anyone, so I appreciate everyone's thoughts and support.

I wish you luck also, and for sure, we will stay in touch! Sue.

[Hidden in reply to liver-bird]

Hello liver-bird.

Just catching up on a few postings for some reason I have missed (some days I don't get any emails when anyone has posted so I don't tend to check-in here then).

Can I jsut say that I don't refer to PBC as an 'illness'. I say that as at present I can't see myself as being ill. I always refer to it as a condition. I am doing well and though it might not remain so years down the line it will only then be that I do say I have an illness.

I do think that urso can play another part in making us at times feel that bit out of sorts. I sometimes feel that I have a lot of acid within though I haven't got heartburn. Those days I feel that maybe I've not eaten enough to coutneract the urso I've taken but that's another puzzle!

[NotorDJP]

Bad days, bad days. Yes, we all have them. Some days I don't want to even move or get out of bed. I have to weigh how much of it is mental and how much is really me feeling bad from the PBC. Its variable so much. I have worst times when I am just before my period, and during it. I feel like the anemia I probably suffer and the stress on my liver to keep up with the loss of blood really puts me under.

Sometimes I am just plain depressed, others I just can't move. I can tell when I have done too much and have to rest. Peridot is right. I tell people that I have a condition or my health in general, not that I have an illness. I look at PBC not a disease, but my own body rebelling against itself. My inflammation has been high for years and I really have to work to keep it under control . I should eat better, but it can be hard to keep up with that when you have so little extra energy. Hope things are better for you. One thing about the Acid is I have always had bad reflux and Urso has never bothered me is this area.