Hello I'm new! Bit confused about ALP and imaging options..

[Skypony]

Hi fellow PBCers

I've recently found this forum and already I'm feeling more supported.

I'm 60, and AMA (M2) was found in 2002 when I was treated for another auto-immune disease, but I was only alerted to the PBC significance in 2011 (naughty NHS!).

Started Urso in 2012 when LFT's were slightly raised, but year or so later they became pretty normal. I struggle with fatigue, which ends my day at about 5pm, when I have to rest in bed. Mornings are okay. I have itching but it's difficult to distinguish from another A/I condition. Insomnia plagues me, but I don't know what to do about it...

Anyway guys, I'm a bit confused at the moment because, after being stable for a few years, my ALP has doubled, and stayed like that for some months. Currently my only other significantly abnormal result is Igm. An isoenzymes test shows my ALP source is liver and bile, not bone. I'm puzzled by this relatively sudden rise. Anyone else had this please, and does it sometimes settle again ? I don't drink alcohol, btw.

I don't know my stage, but hopefully early-ish, despite long AMA history. Don't want a biopsy but would like some kind of imaging to increase my knowledge of where I'm at, especially as I have family responsibilities. After having no GI/hepatology appts for years, I've now got one at Royal Free in early Feb and wonder what your experience or knowledge of scans is, please? Is it worth asking for something like MRI or ultrasound? I've read about a 'Flexscan' but apparently this isn't too helpful at staging unless advanced? I've tried to become better informed about imaging options and their value, but I'm really unclear.

I'd be very grateful for any comments, or please just say 'hi', and thank you for being out there. x

[Lindymarie]

Hi sky pony. I'm newly diagnosed and at the moment on 500 gm of ursso. To be honest I am not 100% knowledgeable of ama lft and the likes. All I know is that I have very early stages of PBC which was discovered whilst I was under a consultant origianally for my thyroid. I used to itch my left forearm until it bled round about 9 months or so ago. I have very bad fatigue but work as a self employed cleaner and clean 2 houses a day as well as looking after my 3 grandchildren. I do get dry mouth and slightly dry eyes and occasionally stomach cramps. That said my liver consultant has informed me that my liver is normal at the moment and there is no signs of varicese. Everyone on this sight are at different stages with different symptoms, some worse than others . I have decided not to look too closely into my future blood tests as I get a little confused as to why some are normal and some are slightly raised. If they stay stable that will be fine. I'm taking one day at a time and trying not to worry about the future because as we all know life is too short to worry and make ourselves worse thinking about it.

Consultant isn't sure how long I may have had this PBC but has said it could have been for a few years before diagnosis.

I'm sorry that I havnt helped you with your concerns but would like to say welcome to this site and I hope you find it useful😀. X

[Skypony in reply to Lindymarie]

Lindymarie thanks so much for your welcome! It's lways helpful to hear other peoples' experiences and views, reminds me I'm not on my own. Glad your liver health is good at monent. x

[teddybear7]

I'm 4 years down the line since diagnosis. My liver tests go up & down the itch comes & goes, the fatigue takes some horrible managing & I'm getting other auto immune conditions on a regular periodic table ( or that's what it seems like ) my latest count is 5. I had an initial ultrasound to eliminate anything else they said & endoscopy to check for variacies. 2 years later a dexa scan bones are a bit soft. I haven't had a Biopsy as very symptomatic I didn't need one. I have not been offered anything else and was told that only a biopsy would stage you. They also said it doesn't really change things if I'm staged so what's the point? I'll know when things are getting bad when my bilirubin levels rise & I go yellow. So they see me every 6 months if I don't feel too good I visit a very knowledgeable GP and carry on as best I can. It takes a bit of juggling, but has kind of become the norm. I'm also T total have been for 2 years now it just made me poorly. Not sure if any of this helps you. But it's apparent we're all lookedafter differently.

[Skypony in reply to teddybear7]

Hi teddybear, it's so useful to hear from other people, thank you!

I'm sympathetic towards your auto immune 'collection', I've got a few, and never quite sure what's doing which symptoms! I'm still working out how to manage things and juggling seems a good word for it. x

[butterflyEi]

Hi Skypony

Welcome to this very kind and knowledgeable forum.

Many of us seem to be diagnosed as an adjunct to some other investigation only to be told we have probably had PBC for years. When I was told I found it very frustrating and any search for information took me off in lots of false directions. Eventually I joined The PBC Foundation and also the PBCers.org in the USA. In this interim period PBC seems to have moved from a rare disease to an uncommon disease so I guess diagnosis has improved.

I do not know my stage and because of a consultation with a very rude young man who dismissed me to the care of my GP I have not seen an NHS specialist for over 5 years so knowledge of my blood results has been restricted as my previous surgery were disinclined to give the information and I am not pushy enough to insist. I have an appointment with a hepatologist at the end of this month and I pray it is not the man I saw some 5 years ago.

There is a company called Perspectum Diagnostics who recently had a study using an MRI to image the liver for non-invasive liver diagnostics but it is still only in the study stage so not sure a specialist can refer you for an MRI scan however I do think it is worth asking. Here is a link about it.

prnewswire.co.uk/news-relea...

I am not sure that it is very important to stage the disease. As there is no cure PBC can only be managed and hopefully with URSO. I know some people are non responders and as yet there is no alternative treatment in the UK. Ocaliva became available in the USA last year but it is apparently very expensive, it will probably take a while for it to reach Europe.

I understand that the Royal Free is a good hospital so I hope you are able to have your questions answered and may be someone who is already a patient at the Royal Free will be along shortly and can better answer you.

BTW I also itch, I take cholestyramine now (Questran Light) and use a 2% menthol cream. I also use an unlicensed drug which I intend to talk to the specialist about and am reluctant to mention it before taking his advice. The Questran improved the ferocity of the itch but did not rid me of it, the cream being a topical application is only a temporary fix.

Best wishes for your appointment, let us know how you get on.

[Skypony in reply to butterflyEi]

ButterflyEi its so kind of you to take the time to share your experiences, thoughts and lots of useful info. Plenty for me to think about! I'm a bit torn between just getting on with life and ignoring the PBC as best I can, and my tendency to want to know things! I suppose none of us likes uncertainty, but we've just got it anyway.

I will report back after my appt, thank you, and I would be interested to hear from anyone who's been seen at the Royal Free.

Best wishes x

[Jlruggie]

Hi sky pony

I'm 59, diagnosed in 2000, biopsies in 2000, 2010 and MRI last year have me at stage 2. Specialist didn't think another biopsy would tell more than an MRI so she used less invasive MRI to do my staging last year. I have high enzymes too. I don't have symptoms, except worry!

Knowing enzymes and staging forces me to look for optimal ways to take care of myself and it just feels good. I take a yoga class every day and lift weights 3x per week, take 375 mg Urso daily, go to a pbc specialist, take calcium, fiber, probiotic, cranberry pill and milk thistle. Hepatologist pbc specialist wants to try Ocaliva to lower enzymes after she rules out auto immune hepatitis.

I'd say it's best to see a specialist yearly, get hepatic function panel monthly, excercise, drink warm water 30 min before and 30 min after eating, eat as vegetarian as you can, drink red wine 4 oz 1 x per week, avoid fatty foods and stay aware of new treatments.

Have s great day and good luck!

Jlruggie

[Skypony in reply to Jlruggie]

Hello Jlruggie

Your approach sounds inspiring! I'm a 'pescatarian' (eat veggies, dairy and fish) and I had a lovely walk today that I found uplifting, but I'm nowhere near as active as you. It's interesting that you find keeping track of your condition helps you with your self-help activities. I'd like to find a balance that works for me so I'm not pre-occupied with my health issues but so I know how best to help myself.

Hearing from other people is so helpful, thank you! x

[Jlruggie in reply to Skypony]

Sky pony,

Thank goodness for this site where we can OCD on our pbc in peace. How can we not get preoccupied with a slowly progressing, incurable disease? I do get periodically preoccupied and do say no to red meat. My brother the urologist pharmaceutical researcher said it's asymptomatic, just enjoy life, take Urso, see hepatologist annually and don't drink! My friends and family are interested and supportive but it doesn't help to worry them. My boyfriend, nice as he is, says he'll be devastated if I get sick and can't bear the idea of watching me die. It doesn't help to bother people who don't have pbc, they don't have it and don't understand.

[LisaC22 in reply to Jlruggie]

Hi there. Just wanted to ask you about your Urso dosage. It seems very low? I think the usual dosage is 13-15mg per kg of weight (per day). Is there a reason your specialist has given you for this?

I'm asking out of curiosity. I'm very focused on medication at the moment. In my case it appears I'm only partially responding to URSO.

Thanks in advance

Lisa

[Jlruggie in reply to LisaC22]

Lisa,

I'm finding out some with pbc don't take Urso at all. My hepatologist reduced my dosage to 2 tablets in am and 1 in pm due to my weight loss, 115 from 123 xnd she said it's counter productive to take more than is needed.

[Skypony in reply to Jlruggie]

jlruggie, yes I too was going to ask about your Urso dose. Clearly you're doing well on it! Did your hepatologist say in what way it's counter productive please? I've just increased mine to 4 x 250 capsules a day (when I remember) but I had thought that a bit more wasn't harmful. Maybe some people get gastric problems at this level?

Thank you

[Jlruggie in reply to Skypony]

I don't have gastric problems. My hepatologist said not to take any extra for the liver to process. Reducing my dosage was due to my reduction in my weight. I now take 2 tablets in the am and 1 tablet in the pm. Each tablet has 250 milligrams so 500mgs in am and 250 in pm. I just read that taking to much causes more harm than good.

[LisaC22 in reply to Jlruggie]

Ah that sounds more like the average dose. Your earlier post said you took 375mg per day.

[jane1964]

Hello Skypony,

I went to Oxford for the MRI trial with perception diagnostics.I arranged it with them myself. They were very helpful and paid for all the costs train fare and b and b -I live quite a long way from Oxford.I found the pictures the MRI scan gave very detailed and useful, and was able to talk to their doctor about them, but it is a trial.I have also had via my consultant and ultrasound after which the consultant said I now have cirrhosis, and a fibroscan, which gave a relatively good result.Not sure what to make of the fibroscan result as it was much better than the other two, and I haven't seen my consultant since I had it to see what he thinks,time will tell I suppose.

Jane

[Skypony in reply to jane1964]

Hi Jane

Thank you for telling me about the Oxford MRI and other scans you've had. I'm starting to feel a bit better informed about imaging, although clearly there are still some questionmarks. I'll ask the consultant in February about the perception MRI, it'll be interesting to see what he feels about it. I don't yet know what I might be offered on the NHS, but anything is better than the nothing I have at the moment! x

[Ktltel]

MRE. Just make sure your Ferritin is in normal range. MRE is 95% accurate in checking for several issues including and specifically early fibrosis.

Stella❤