Dear all in 2013 I was diagnosed PBC based on positive AMA (possibly overlap with scleroderma and/others, last not confirmed through serology and several biopsies.)
On Ursofalk since December 2013, December 2014 Alat,Asat, ggt improved, phosphates stayed equally high: 190
2 other tests in 2014: AMA negative
January 2014: Gastroenterologist decided to take me off urso to do biopsy after three months when liver is inflamed. All values went up again. Liver biopsy March 2015 leucocytes and tiny shunts, yet no clear PBC or PSC.
Gastroenterologist decided to keep me off Urso to see if liver stabilizes or gets worse. Now June suddenly all lab values exploded, ggt 277, phospatase 241, Alat 200, Asat 121 worse than before 2013 when I did not have Urso yet. And triple from being on Urso. And it took the Urso a year to work!
Gastroenterologist is thinking of doing a second biopsy. What do you think? And until then no Ursofalk. Might take another two month until I get an appointment for a liver biopsy.
Getting worried here. Besides being sick like hell again. Seems they are forgetting there is a person attached to that liver ;-)?
Also do any of you recognize below symptoms from within PBC? They cannot make anything if this except one rheumatologist who says autoimmune overlap syndrome negative for antibodies. So no treatment for these symptoms.
And what do you think about biopsy and AMA negative liver issues responding well to Urso?
I so want my Urso back, grmble
Health issues: exhaustion (duuh heavy liver inflammation), radiating pain in joints and muscles, blurred vision, big belly mainly evening, cannot sit for to long, skin rashes, periods of infection in several nerves aka loss of sensibility and stability in one leg, dry eyes, nose, mouth), recurrent eye infections and ear infection since teen, aphtes in mouth, tongue, intimate region and since 2014 a growing indent on my skull with periods of inflammation. A specific white matter lesions already diagnosed 10 years ago. Had lip biopsy, scalp biopsy, quadriceps muscle biopsy and all blood tests including lumbar puncture (behaves like MS is not MS), once Ana slightly elevated once Ena slightly elevated all differentiated blood tests negative. All biopsies showing inflammation with leisured but not enough to diagnose for Sjogren, scleroderma or any muscle disease.
Thank you all for your attention and exude the length of this posting
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martinap
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Firstly I can't say for certain if you have PBC obviously as I'm not medically trained. Your supposed diagnosis and being started on urso seems to have been due to the AMAs (anti-mitochondria antibodies). I am in the UK and I was diagnosed back in Dec 2010 with PBC based on firstly that I was itching (a fortnight after starting, I took myself to see the GP. I am in the UK. I also had fatigue at the time). I had bloods done, the liver function test (the LFTs) came back showing abnormal. Other blood tests I had that can apparently corrulate with abnormal LFTs came back negative. GP then did another blood test to decide if it was liver or bone related as you can have abnormal LFTs with a bone disorder. After a scan that showed up pretty much normal I ended up seeing hospital doctor later 201, that day I had the antibodies tests, the AMA on mine showed to be with a 'high titre' of the AMAs and I was diagnosed with PBC. I started on urso Dec 2010.
I am not sure why you were started on urso and then taken off given you had improving LFTs. Mine have improved over time (out of interest to yourself my ALP was 236 at last blood check. My LFts are still abnormal 4 and half years on with urso but they are said to be fine for PBC. I only itch these days at night, fatigue vanished during 2011).
A liver biopsy can give a diagnosis of PBC due to the cell changes. It is said though that a biopsy isn't an exact for liver damage though due to the fact liver is a large organ and biospy site only one tiny area. I can't comment on PSC as I don't know.
With a liver problem you can have the same symptons from what I have read with the various conditions. Itching and fatigue seem to be the most commonest but there are a lot of others too. Bones can suffer with a liver problem due to less absorption of certain vitamins like D for eg. (I utilise the sun for around half hour at least if I can when we have it here in the UK to top up my Vit D levels.)
Also it has to be noted that if one has certain other health problems and on certain medications, medications can also alter the LFTs in some cases.
I have read that some on the site state tht when they've had a repeat of the AMAs at a later date they have had variable results, even negative result. I've never had a repeat of it and for myself it would be quite pointless now. Once of a day I might have thought differently as for a few years following diagnose I did think it was something and nothing and that it would go away even though I know it isn't like that.
Has your doctor explained the now reluctance to not re-prescribe the urso at all. I think this might the a question you need to address with him/her. As far as I know only PBC is where urso is used so that might be the reason, the doctor is still wanting to find out a diagnosis.
It can be so frustrating and yes worrying when you seem sort of limbo not knowing what is wrong. I know myself I spent 9 months back in 2010 itching 24/7 and wanting to know what was up but the wheels of the NHS seemed to start grinding to a slow halt and when I was diagnoses by the AMA blood test I did and do still wonder why on earth I wasn't checked earlier as the itch would have started subsiding much sooner I think.
Thank you Peridot for your time and lenghty reply. Yes you are completely right, as far as I know only PBC is where urso is used and only after administering my AMA's where positive twice and my values dropped.
I think the doctor is still wanting to find out a diagnosis becuase the health insurance here (The Netherlands) is gettting each time more difficult about paying medication. Oddest thing now: test results from hospital came back and they wehre still elevated like the elevation I had around the last biopsy but not as elevated as last weeks when I tested at my GP. So probably they are doing nothing now. I will hear on Wednesday. No alcohol, cigarettes, medicaiton not even vitamines here. Oddest thing. I wait for them to come back to me and will let you know. Thanks again for your care and reaction
Seems that there are quite some variants between countries with regards to PBC but we all seem to take urso if we are diagnosed.
I know in the USA it seems that even if a patient is diagnosed with PBC a biopsy is apparently requested for some staging process of PBC. I personally don't go in for this. I am pretty confident that nowadays a patient with PBC can be monitored pretty well with bloods and scans.
I was not a big alcohol drinker pre-2010 so abstaining from my first LFTs early 2010 isn't something that bothers me at all. I choose not to drink and the only time I have had alcohol in a very tiny amount was some in a cup of tea during the recent winter when it was so very cold, bit of whisky it was that in the UK my grandparents used to have when feeling notso good with colds, etc.
I've never smoked so that is no issue to me but it is said if you are a smoker to try to give it up if you are diagnosed with PBC.
I don't take any vitamin or mineral supplements myself. Only time was early 2010 I had a short course of iron as my bloods were showing I needed a bit of a top up.
You are correct regarding the liver biopsy recommendation here in the U.s. I have now refused them twice, as I agree the blood work is indicative of where you are at. I have abnormal LFT'S. ALT is around 60 and AST is like 58. My ALP IS 198. Since going on urso, these numbers were cut in half! I unlike you, have no symptoms thank God! My gastro doctor is not happy with my refusal of biopsies but my issue is this: If my bilirubin and everything else is normal other than the LFTS, there is no need to aggravate my liver any more than it already is. They cannot cure my liver with a biopsy so no thank you. Not to mention the complication I have read that can be involved in doing a biospy. My biggest issue is the urso side effects of the hair thinning. It is ridiculous and as I mentioned in an earlier post, I have been off urso for over 3 weeks now and my hair is no longer falling out! Seeking alternative treatment at this time as I am frustrated with conventional medicine.
Interesting that you say that you have temporarily stopped urso and you feel better with your hair situation. Have you maybe thought of asking for a different manufacturer of the urso to see if that makes a difference? I know when the original 300mgs Urdox I started taking at diagnosis were withdrawn summer 2013 I had to go on the 150mg tablets. I was no happy but got them and I was given Destolit, a brand for my first new script. No problems but then the next script the pharmacist told me I had to have generics as that is how my script had always been written. Had the most awful heartburn for the 84 days supply I had of the generics, so much so that I had to see the GP to ask for the Destolit (dearer to our NHS of course! But I do pay for my scripts). She writes the script out for Destolit now as she said if anything else was available that was better me taking than another one then I get the better one.
I think if anyone doesn't want a biopsy after a confirmed PBC diagnosis then it's the patient's right. Like you say why put yourself through something that can carry a risk to not really be informed much when the results come in anyway.
The only reason I continue to take the urso is because I itch and I do not want the 24/7 itch I had back in 2010. Taking urso for me has resolved it a bit which is more tolerable than it was back in 2010. I keep my fingers crossed that the itch never returns how it once was but again there are no guarantees with PBC so I make the best use of time now.
I never thought to ask for a different manufacturer.. interesting. My Insurance company makes me use CVS pharmacy here in the US and I was on 300 mgs 3 times a day of Ursodiol. Well, lets say 2 times a day, as I dont eat often enough to take it 3 times. lol. But yeah, my hair is returning and no longer falling out ! Go figure. I know for certain it is the Urso because the first 2 weeks on it, I had the horrible shedding
I noticed with the different manufacturers of the urso (I have had 3 different ones in the UK since diagnosis and still thought the original 300mgs were better), the filling ingredients can vary. I figured with the generic 150mg tablets that I had that caused heartburn one of the fillers or how it reacts in the body with the actual ingredient might have been the cause.
You can apparently encounter heartburn in PBC but to me it seemed odd that after taking urso for over 2yrs and then be changed for it to return daily every evening. I don't encounter this effect with the brand one I am on.
Not sure if it might be worth having a snoop to find out if the fillers hold some sort of side-effects. I notice that a lot of tablets have talc in them, povidone is another one. Some are apparently harmless but I do think that over time some might cause other problems. But with having PBC just have to take the urso in my case as so far I've not done badly with it at all.
I would talk to the PBC Foundation: there is a link to their site at the top of this page. Once on the site you will find phone numbers and email link to their trained advisors,
Obviously, we are all different, and the experience of PBC is so very, very varied, that it is impossible for any one person to be an expert on all the symptoms, manifestations, and routes to PBC. So I would definitely contact the PBC F.
To have a definite diagnosis of PBC you generally need at least 2 out of 3 criteria to be noted:
1) abnormal lfts for more than 6 months, with the marker chemicals out of the ordinary - as you mention. And /or:
2) the presence of AMAs. And/or:
3) a liver biopsy that shows damage to the bile ducts.
It is possible to have only AMAs and not have PBC, although PBC may always develop: in these cases the presence of abnormal lfts will be checked for, for life.
It is also possible to have PBC without AMAs being present - although this only happens in about 5% of cases - it is possible you fit this profile. Although biopsies are not given lightly, they would generally be given in this situation, although yes, they would also be checking for other conditions, as there are many other autoimmune conditions that can also occur to people with PBC.
If you have had biopsies already, and they did show bile duct damage, I don't know why they would stop the urso.
I guess they want more biopsies to check for other issues ... but:
I'm not an expert - you need to talk to the PBC F.
I hope it gets sorted, take care, will be thinking of you.
Thanks for all houd input and attention and tips. The specialist phoned and they decided to put me on Ursofalk again, I am very relieved about that because in the past two month my values dramatically increased. Worse then before the diagnosis in 2013. Yes 2013 AMAs were positive once, after that in 2014 while I was on Ursofalk AMAs where negative. No major fibrosis in two fibroscand. Every value dropped to normal levels after one year of Ursofalk except one:
Alkaline phosphates remained high around 198. To the amazement of the specialist. Apparently phosphatase is most indicative for long term survival. Since serologic ally not PSC AIH or PBC could be confirmed they took me off Ursofalk in January to confirm what it is exactly.
An uncommon case in behavior and serology.
Amazement that also the biopsy could not confirm PBC or any other liver disease. Yes small fibrosis, some very minor shunts. Intoxication by medication was what the pathologist offered as explanation. Well I don't drink, smoke or yes drugs or any other medication.
So not clearly fitting into the protocol. Which doesn't justify administration of Ursofalk. Happy they decided to anyway given the clinical behavior of the disease.
As for my other symptoms one of the reumatologists says it is autoimmune and we need to sit it out and watch the progress. I had Lyme disease about 15 years ago and the internist says at this level it is impossible to distinguish what was first Lyme or autoimmune or if the Lyme turned into autoimmune.
Peridot: I was very very happy to read that the Urso did improve your symptoms aka itching! I had minor itching only. Along with mainly skin rashes.
When putting me in Ursofalk the doctors told me it would not deal with the symptoms at all. It started working only after a year. And I had the feeling I did improve!
Less silva syndrome, belly got smaller in the evening, a tiny bit less tired and a tiny bit less muscle pain mainly in my upper legs.
When starting medication I first was given some other brand I will look it up, that was in Germnay.
They told me values should Improve within six months otherwise it looks grim.
(I have had elevated liver enzymes for 11 years already which were not acted upon by doctors)
I was scared to death when nothing improved by mid 2014. I then swapped to Ursofalk being in The Netherlands and my values improved.
Hope the information was helpful. Most grateful for your tips and sharing.
Cheers, Martina
PS: I always get worse with heat and sunshine any of you recognize that?
Is there any connection between PBC and Hughes syndrome or Sojerns?my sister has both. She also has terrible itching and problems with chronic fatigue. Thanks for any input.
I know there is something called Overlap syndrome which means people with PBC often get other autoimmune diseases like scleroderma or Sjögren. There is a lot of information on this on the internet but best to check with her specialists who are treating your sister or contact the PBC Foundation. I wish you all a lot of strenght. Best eishes
Thanks so much for your reply. She does have so many overlap problems. Also complains of terrible itching. Told her about this forum hope she looks into it. Think she is overwhelmed right now. Thanks again.
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strange PBC , LFT back to normal before starting Urso- anyone with similar experience?
My Liver Biopsy
