Finally, after 4 month I have got a rest from all the investigations!

Hello everyone,

I finally finshed all my investigations at the end of August, after being diagnosed with PBC at the end of May. The time from May to now, very much felt like a roller coaster ride, especially as I have been quite unwell inbetween. As other people mentioned before me - I was so fed up of being poked, prodded and pricked all the time and I am so glad that it is FINALLY over for now. I know, I mentioned that before, but it was also very helpful to read your posts and about your experiences with everything to do with PBC.

Since being on the Urso my itch and fatigue have somewhat improved and I honestly can say that I currently feel better than I have in a very long time.

The results of my investigations showed that I have already some scarring of my liver, which explains my ongoing problems with nausea and weight loss. According to the fibroscan I am somewhere between F3/F4 which means fibrosis/?beginning cirrhosis. However, I am glad that my consultant didn't insist on a liver biopsy to do a proper staging, also he offered it to me which I declined. At the end of the day it doesn't matter if I know what stage I am, as it doesn't change anything in regards to my treatment.

Beginning of August I have seen the liver dietician which was extremely helpful. She upped my daily calorie intake which now kind of helps to mainain my current weight. In regards to the nausea - I am not nauseous everyday and not at the same level, but found that on days where it is pretty bad that it helps to add ginger to my food or to have fresh ginger in vegetable broth (I don't like ginger tea).

I am to start on bi-phosphate for my spinal osteoporosis soon, as this has deteriorated quite a bit. I am already on calcium/vitD. I also started a regular exercise programme with the aim to do weights 3x times/week to help build muscles. What I noticed is that since I introduced daily exercises (mainly going for walks) that it helped very much to further improve my fatigue. However, I still do have days where I am too fatigued to do very much at all.

I am still on large amounts of Lactulose which does cause me very often to bloat (and fart *blush*) horrendously. On really bad days I do look like I swallowed a beach ball. Does anyone have any suggestions on how to combat that?

I eat mostly vegetarian/vegan with the odd fish or white meat tossed in. I have tried glutenfree for some time, which didn't make a difference. I also left out food which is associated with causing bloating - nope, no difference there either. I was a bit put off by my consultant who said that I "just have to get used to it" as it is the combination of Lactulose and Urso which causes it, and the liver dietician didn't have any suggestions either. So, I do hope that you guys have something what worked for you, which I may could try.

One more question in regards to alcohol. I have never really drunk anything aside from the odd glass of wine or cider (about once a year), but I used to use wine from time to time in cooking. Since, I know that my liver has got scarring already I am a bit scarred of using wine in cooking - any thoughts on that one? I actually forgot to ask the liver dietician about that.

However, I am glad that we have this forum to exchange experiences and being able to have a "moan" from time to time when we don't feel well, or just to share valuable information. I wish everyone a fab weekend.

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  • Hi there fellow PBcer,

    It sounds like a living nightmare. I wished that I was in your shoes as I am awaiting a transplant. I guess we have all been dealt cards and just have to live with it. I don't know what your family situation is but I have a husband who doesn't have a clue and cannot understand the fatigue/ muscle weakness issue as I'm 41 but I know that things could be worse.

    I agree it's good to have this forum to let off steam to people who truly understand. I just wished I could offer you a solution about the bloating.

    Good luck with everything x

  • Hi Florrie505, I am expecting to be up in Newcastle for transplant assessment in the next few months, it was your reference to family situation that I am responding to, my wife (yes I am one of those rare men with PBC) is so understanding I can not say how lucky I am.... of course I have suffered all the symptoms (excluding the itch, which must be another burden to bear on top of all the others) once the fatigue hit me I slept 20 out of 24 hours more than once, this was not like I felt like a sleep, I simply had no choice... I looked well, I was very ill, - partners support is something we all need, if there is anything one "tough old logical and compartmentalised man" can say to another to help understanding, send me a P.M. Good luck....

  • This will not necessarily be a solution for you - but when I was diagnosed with Inflammatory Arthritis I was put on Hydroxychloroquine and a side effect of that was to get rid of my bloating. Doctors don't know why but I'm not complaining!

    *Don't worry about cooking with wine - the alcohol will evaporate with heating.

    Take Care x

  • I also suffer from nausea most days,I also cough a great deal particularly in bed.Fatugue does bother me particularly because my husband is in a wheelchair and I need to tend to him 24/7 .It is good to be able to share symptoms with others and the foundation magazine helps us share these.Unfortunatly there is no cure and we must cope as best we can.

  • Hi shirley Have you been tested for sarcoidosis. You get a cough with that.

    I was diagnosed about 8 years ago with PBC and sjogrens syndrome.

    Last year I had a troublesome cough and croaky voice, tiredness was worse aches and pains all over and after 17 months of waiting I finally got to see a consultant who sent me for loads of scans, blood tests, respiritary tests etc. He suspected that I had sarcoidosis. It has been a hard 10 months and I see the consultant on wednesday when I hope that I will learn what exactly I do have wrong with me.

    After a dreadful appointment with the gastro a few months ago. She said she doubted I had PBC and that the fact my AMA was showing positive meant nothing as it could be a positive negative! Whatever that means. She couldn't get the computor working to see results of scans so had no results to see the 20 small gall stones that I was told had shown up. She then went on to offer me anti depressants as I look after my daughter who has special needs. In fact she spent a third of the appointment time quizing me as to how I coped with that. I told her that after 48 years you just get on with it.

    She put in the letter I hadn't complained of having nausea she didn't ask me if I did. I have lots of nausea. In fact I put ginger ale on my cereal instad of milk. I have a stomach like a football but she never examined me in any way.

    My G.P. told me to write a letter of complaint but I am scared of doing that as you do not know when you will need them and living on an Island we only have one hospital. I am glad now that I was not offered any medication other than losec and other minor meds for treating symptoms as if I have not got PBC I could have been taking URSO for 8 year when I didn't need it.

    Sorry for rambling on but I am having a bad day and am worried about the appointment on Wednesday.

  • hi I was coughing a lot then my daughter had to go onto lactlose free diet - so we switchd to soya /almond milk and this has resulted in my cough going away - so that may be worth a try.

  • Hello littledragon23.

    With regards to myself, when I was just short of becoming 46 in 2010 I started with the itch and was very fatigued at the time. (I was working full-time and flat out back then.)

    From visiting the GP late March 2010 and starting with blood work, took until Dec that year for me to get diagnose of PBC and start on urso. I just had intermittent blood tests for this and that, a scan and then finally when I saw the hospital consultant early Nov I had the AMA blood test.

    I have only had follow up bloods done since diagnose and my LFTs have dropped considerably but the odd time they start to climb slightly. But they are what is said to be stable currently.

    Unlike yourself I only have PBC and as far as I know I do not have any other problems. Back in 2010 I was borderline Vit D deficient but never had any supplements and a check at a later date for Vit D showed me to be back in the normal level.

    Now when I first started on urso I did become bloated and also suffered from heartburn for around 3 months so I think that is part of the initial side-effect. Some people also suffer diarrhoea which I never have done but I do occasionally get constipated which I never did prior to ever taking urso.

    I've never heard of a liver dietician, thought that they all covered the same bracketing of dietician. With regards to diet, I was never informed of anything I should avoid (alcohol neither but I shall come to that shortly). Before I had the AMA test, the consultant I saw said 'the liver likes calories' when I asked him myself if I should avoid certain foodstuffs.

    I had started to cut out certain things like MSG., artificial sweeteners long before being diagnosed once I was informed it seemed I had a problem in the liver area. I do think quality is by far better than quantity. I also cut out more fat out of my diet tho' I was never a fatty fried food fan, chips, etc. so that is easy for me. Oats are said to be good for helping with cholesterol in the system of which bile is needed to break it down. Oats are also a filling food, low fat and of course vegetarian (tho' not vegan if you do drink cow's milk). Rice is of good benefit I think, brown or white, I use both as gluten-free and also low fat. I like jacket potatoes which I think are a pretty nutritious food and with the skin high in fibre.

    Not sure about Lactulose as don't know much about it but just Googled so I know what it is now. These sort of products can in fact give you symptons that you are trying to rid yourself of you know. So just maybe that could be easing in one respect but then clashing in another. I think with urso as our system starts to slowly recover, given urso has itching as one of the side-effects, it could be like a force and tho' the system seems to be combatting it, it is causing us to itch so we don't actually rid ourselves of it altogether if that makes sense? I still itch but it is confined to night-time. I know I notice on a lot of side-effects listed for drugs, what they are used for can also cause the same problems.

    Alcohol for me was a complete abstinence when I received my first abnormal blood test. I was asked how much I drank by the GP to which I told him I'd not had a drink since the Christmas which was 4 months earlier as I've never been much of a drinker at all. It just doesn't bother me not having a drink anymore. It's not been mentioned to me not to drink but I think it was probably noted from the beginning that I do not drink. I do think that a splash of wine in cooking isn't going to be of any detriment to PBC or the liver at all. I have of the occasion when I have been cooking a meal for my family in the evening, put a bit of Guiness to make a rich sauce with steak my husband, son and brother like but it is a rarity but it is a rarity and only a small amount (of which I have to say I do not finish the bottle!). Apparently alcohol used in cooking reduces so the alcohol content is pretty negligable but I think that is where a recipe calls for a couple dessertspoonsful, can't say if a lot more added as I do not know.

    Scarring on the liver is actually not a sign of cirrhosis I believe. I am certain if you did have cirrhosis then you'd have been informed of this. Your blood work would have given some warning signs I am sure. I never got offered a biopsy but I'd not have taken it up due to the fact that when I had the AMA test and was diagnosed with PBC along with the couple of symptons I had at the time and abnormal LFTs then that was enough for me. I have no interest whatsoever in staging or whatever it is known. Three and half years on from itching I just go with how I feel. Know my LFTs are considerably improved and I haven't suffered fatigue in quite some time. I only know I have PBC due to the itch now or I'd not know I had it. I do think that nowadays along with the bloods and also scans, it is a pretty good indicator how one is doing with PBC. Remember too cirrhosis is a state that can last for a long time also and there's no idea if it will continue to progress or not.

    I don't know if it will work for all but I tend to find I can eat exceptionally well at morning and lunchtime but come evening I have slowed down a lot and don't eat a lot for this meal. I then don't eat more than a couple dry biscuits in the evening if I do have anything else to eat. I find this works for me as I go on my own theory that if food takes around 8hrs to digest then we have bile that has been used for processing food still circulating in the system via the bloodstream of which is thought to cause the itch. By not eating at all or very little in the evening then the gallbladder has no reason to empty itself as that is when it does, after eating and there is less bile flowing later in the evening. My itch only lasts from around 11p.m. until 5a.m. so I don't count myself that unlucky with PBC but I'd like to say I do not itch at all.

    I know feeling nauseous is awful, I've suffered it from time to time over the years but mine used to come just before the monthly cycle. Not something I can say I feel much these days. I know ginger is supposed to settle the stomach, unfortunately for me it gives me heartburn. Now peppermint is good for settling the stomach and also it can help with flatulence so that might be something to consider. You can buy peppermint oil in capsules. It is also good at alleviating heartburn which I bought some for at the start of taking urso.

    You haven't been on urso overly-long yet and I think with more time you might start to feel less nauseous and start to improve greatly. Best Wishes. Please let us know how you are getting along.

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