I have been feeling really naff recently (excuse technical term lol ). Feeling really really tired, no energy and feeling really sick every morning. I have the consultant on Wednesday and was going to ask her what I could do. Had to go and get bloods done a week in advance to take to the hospital with me. You can imagine my surprise when I find out my bloods are the best they have ever been in the 15 plus years I have had PBC. who is going to believe me now?? 🤔

30 Replies

  • Hello June9961.

    Since starting urso Dec 2010 and having improved LFTs I have found that if I think I'm not doing so good (I just have the itch, often keeps me awake for periods of time during the night causing broken sleep that leads to feeling tired later afternoon), the bloods seem to come back good but whereas if I am feeling 'on top of the world' I tend to get results that I wasn't expecting that are not as good as previously.

    I find this PBC lark a bit baffling. Things don't seem to how we think they might be even down to the fact that itching is apparently no true reflection as to how each of us who do encounter the constant itch really are. Seems that we can be at any of the so-called 'stages' in PBC and we either develop the itch or don't.

  • Thanks Peridot, I get the itch too but not very often. I mainly get the pains and the severe fatigue. You are right in what you say. Last visit to hospital I felt really good and my bloods were poor. This last 6 months I have felt awful and my fear is the consultant will not take me seriously when I tell her how ill I feel. I was thinking on taking my husband with me because he has seen how ill I have been. You would think that after over 15 years on I would be used to this disease by now.

  • Hello June,

    I also have the problems with fatigue,in fact that was what I first went to the doctor about and at that time I had the antibody, itching and fatigue but normal liver tests,they went abnormal about 4 years later.All this time ,ten years now I have found the fatigue by far my worst symptom, it seems for me to have times of being much worse and times a bit better in cycles but overall gradually getting worse.I find the only thing that helps is to go with it not fight it when it's bad.But I know that I often find this frustrating and hard to explain to people and you have my sympathy.I used to try to hide this from my family but now am more honest about how I am feeling and they have learnt to help me this has made things better.I hope this helps you, you can have bad fatigue even with good liver results.

    Try to be kind to yourself and use your limited energy in the best way for you if you can.But you should tell your consultant your symptoms of fatigue and sickness, so they can check you out as everyone is different and to make sure it isn't anything else or something that they can help you with.


  • Thank you Jane for putting this so well. I read my reply and realized I just need to go to sleep for a while. My thinking is not as it used to be.

  • Hi Peridot. This itching is starting to get the better of me. I find every month for about a week it is totally out of hand. I sometimes feel I just cannot take it anymore. I know there are lots of other things also not the way they used to be, like my eyes get very itchy and red and dry mouth etc. but the itching, is just unbearable. Have a itch free weekend. Regards

  • Hello Rockie.

    Sorry to read that you are finding it starting to become unbearable with the itch. Likewise certain times in the month I find the itch can be a bit more intense too. I put mine down to hormonal changes. I started to have a more erratic female cycle almost 3yrs ago and still not completed the menopause (I am nearly 52). It is at this time I have noted I feel worse regarding the itch for some reason.

    My eyes I sometimes rub as they feel a bit itchy but so far I've not had any dry eyes or dry mouth.

  • Hi Peridot. I suppose my age ( 75 next month) has also got a lot to do with the dry eyes and mouth. Luckily I dont suffer much from fatique. That is the only way the itch seems to ease a bit, is when I keep busy and keep the blood circulation going. I am sure I must have had this PBC for many years, just was'nt aware of it until I suffered from loose stools and the itching started, but was not half as bad as now. . At your age my over active Thyroid was diagnosed (I have always been thin) could not understand that it was not the other way round, but it is the Auto Immune. I dont often go to drs and for tests, because unfortunately it is not a disease that is common. So we are different. Enjoy the Christmas Season.

  • Sorry Peridot meant under active thyroid

  • I definitely agree there with you Rockie, being active in the day does somehow make the itching vanish. It is when I sit down to do certain things I start feeling prickly. I started buying the adult colouring books that seem to be sweeping the UK and find that when I have a spare moment and even early evening with some lovely relaxing music I can do this and don't feel the prickles/itch. If I was to put the tv on though it is a different matter so only tend to have tv on after 9p.m.

    I know during the night if I wake up I seem to automatically pop to the loo and I think due to the itch vanishing temporarily this is probably why. I hope I've dropped back off to sleep before I start feeling the itch once again.

  • That is why the GP has given me a sleeping pill. Now I sometimes sleep at least 4 - 5 hours without the itch bothering me

  • Morning Peridot. Have been thinking of you a lot. Have you been affected by the floods, must be terrible to be in such a situation. Good luck and best wishes for 2016

  • Thank you for your post Rockie.

    Thankfully where I live not been affected by the floods but the surrounding villages not too far away have. Being on the Yorkshire border too, they have got it pretty badly once again (Hebden Bridge is one, a place I frequent a lot during the warmer months).

    All the best to you too in 2016 and everyone else on here.

    PS Cannot believe in a few months time I will have had this itch for 6 years. Not been too bad over the festive period but then again not over-indulged foodwise either.

  • I also have had this itch for 6years, but must admit it gets worse, but lets be positive and see what 2016 will be like. Glad you not in flooded area. Regards

  • Hello again. Me too I am thankful that I am not flooded. I really do feel for people who have found the festive season worrying with their homes (and businesses) flooded.

    Isn't getting any better this weather, we have had exceptionally high winds during the night as well as some rain too.

  • Here in South Africa we suffer from heat and drought and sometimes heavy thunderstorms with hail. Funny times and seasons. The farmers suffer with their livestock and cannot plant their crop. Very sad

  • Thanks Jane for your reassuring words. I will post how I get on after my appointment. X

  • Fantastic. Remember it is the end of a long year, normal to feel exhausted

  • Sorry to be glib but I don't think pbc follows the calendar.

  • I think what Rockie is perhaps meaning iowcaro is how I think, have for many many years even pre-PBC. I know if you live in England as I do, come the winter months when we have the dark nights, the depressing weather, I do think anyone can feel more susceptible to being down and lacking in the energy that we can sustain during the warmer longer days and lighter nights.

    I think in England this is natural.

  • Yeah I know what you are saying about Uk. Get up and then its time to go to bed. Lol. But having said that I suffered the same with fatigue in good old sunny Spain in winter, where it is sunny most days in winter. Pbc has shrunk my life, the fatigue stops me from being the person I was 4 years ago. This week I have ignored the fatigue and really pushed myself only to end up with a headache (which I rarely suffer with), legs seize up, nausea, and not having the energy to get dressed. I hate that I can't do sport like I used to. I'm not bothered about whats up ahead with pbc, you've got to die from something, its now that it bothers me. I hate to been seen as a wimp. I was as strong as an ox before this, I could work like a man, i love to work with my hands and I love the outdoors. I can do bits but I pay for it with knock out fatigue. I am grateful though that I don't suffer with the itch but that could change. I really sympathise with those that have it. I just hope they find a cure for pbc soon and we can all have our lives back.

  • I could not agree with you more about this finding a cure for PBC

  • Your bloods can still be good it's not all about them the liver is a very clever organ. I have lots of symptoms the fatigue sickness & tiredness is horrible & more when I over do it. It's not a case if who believes you. A knowledgeable nurse told me that my body is concentrating so much on dealing with the PBC that there is no energy left for normal things hence the exhaustion. & yes I can wake up that way too. X

  • I have always been sceptical regarding the urso with this PBC. I say this because I feel that perhaps the urso is somehow 'fudging' these blood readings.

    I think because it's not exactly certain how the urso works except it adds further of a bile component to our system that then helps for better digestion with a compromised biliary system, this is maybe why I guess this way.

  • Having been off of Urso for 4 years (lack of insurance) I am now being told to take it again. I feel amazing and all tests are good except for my AMA levels. But when I take the urso... I feel nauseous.. I get diarrhea, fatigue AND I ITCH! I have had zero problems with itchiness or anything else while off this medication. I stare at that big bottle of pills every night. I take one now and then but it's killing me to do it

  • This explains about fatigue in pbc, a bit of heavy reading, also in pbc foundation they info about this.

  • I agree with you about the urso peridot, my consultant thinks I have gone from first being diagnosed with severe PBC that I am getting better and i now have mild PBC just because of my blood results, but then again you know what i think of my gastro :o)

    He is more interested in telling me where he is going, where he has been and what hospitals he was at in the good old day's. Good job I have a good GP.

  • Everyone with PBC believes you and any doctor really knowledgeable about PBC.

    I read an article published by the NIH that said they were looking at a medication used to treat ADHD to help the unrelenting fatigue that can occur in PBC.

    My blood work is also pretty good after 5 years however the fatigue and itching are much worse. Apparently there is no correlation between blood work result s and degree of these two symptoms.

  • Hello KarenLeslie.

    Interesting post. I have a family member, young man who is now 17 who was apparently diagnosed with ADHD when he was 10. Started on Ritalin and in the last 2 yrs a new cheaper to the NHS version known as Concerta XL. I can't figure out why a medication for ADHD would help fatigue somehow. I say this because these current meds are supposed to slow the person taking it down.

    I know the meds for ADHD can also alter the blood pressure and in children can affect their growing.

    Be interesting finding out if anything is researched on these meds though as to if they make any difference to fatigue in PBC. I don't currently have fatigue but in future there is no way of knowing.

  • When I was first diagnosed with PBC my doctor put me on Nuvigill which is a non narcotic drug similar to Adderall and Ritalin. I have also been diagnosed with ADHD for years but was never wanting the meds. My insurance wouldn't pay for the Nuvigill and I couldn't afford it but they would pay for adderall. I have been taking it for 5 years and it does help with the fatigue. It helped clear up the brain fogginess and I can connect my thoughts and focus. Surprisingly it also helps me sleep deeper at night. I have fought myself on taking it but the bottom line is that it has helped me. As a result I have had motivation to do more. ALL symptoms of PBC went away. Itchiness fatigue depression bloating constipation weight retention body aches. This wasn't the adderall alone but the adderall gives me the clarity and motivation to do things that improved my health. From exercise to even becoming creative and interested in life again. Maybe it's helping the ADHD but my overall health has improved.

  • Ritalin and its companions are actually nervous system stimulants. Sounds back adds for ADHD but it works.

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