Hi, this is my first time on here. The ques... - PBC Foundation
Hi, this is my first time on here. The question i want to ask is if the urso medication is not proven to work why do i have to take it?
Hi Gemma unfortunately Urso is the only drug known to improve Liver Function Tests and it is why it is the only drug prescribed for people with PBC. Have you been diagnosed long and are you having diffficulty taking the Urso if you dont mind me asking.
Hi,
Thank you for your reply. I was diagnosed about april time. After reading about urso though it only seems to help the liver tests and not actually the liver? The side effects scare me i don't want to put on weight. Do you have PBC?
Hi Gemma
Sorry to hear about your recent diagnosis, it is a shock isn't it. I found out through some blood tests about 3 years ago, it was especially worrying as my brother has PSC and had recently had a liver transplant (in 2009). Urso is the only drug that limits the effects on the liver, I would have thought if the blood results are nearer normal the liver will be functioning nearer normal and the effects will be reduced, I don't believe Urso just masks ongoing damage. Since taking Urso I have reaction to the capsule coating with hives, so now take the tablets and had no other problems.... My only problem is remembering to take the thing and I frequently have to run downstairs just before bed to quickly take them, although my consultant has said it doesn't really matter when you take them.
I continue to be asymptomatic, for which I am blessed, although I do seem to have developed Raynaulds, although it was when i was skiing and minus 15.... and my ankles seem to swell in the summer when it very hot.
I would ask your consultant about your concerns, we can only give you our experiences, but for what it is worth I say take the urso and see how it goes.
Good luck
Lou
Hi lou,
Thank you for your reply. Yes it was a shock and i get mixed signals about the conditions because like you said everyone is different. I also have raynauds and that is how my PBC was discovered. I will take the tablets and see how i get on, i just feel a bit scared but after reading more comments its seems most people suffer any side effects. I just hope that pbc will not effect my quality of life
I started on Urso at the beginning of July after just being diagnosed with PBC. 3 weeks later I had my LFT checked as part of my yrly Hypertension review with the practice nurse. Results showed that the LFT had "greatly improved" That was a relief to hear. I haven't experienced any side effects, including the diarrhoea that the specialist warned me about
Ok thank you i will maybe give it a go but i am reluctant
Hi Gemma I was on it for 11yrs I didnt put on weight that I recall. I went off it a yr ago because of itch being so much worse. I had read about a new drug being trialed for PBC which sounded very similar to Urso and patients in the trial complained of itch as a side effect of taking the medication even those who had never before had itch and as I had been having a horrendous yr with the itch being totally unbearable and uncontrollable ( like the yr before I was diagnosed) so I decided to stop the Urso to see if that would help. I had tried every other thing prescribed for intractible itch and was even put forward for transplant assessment because of it. However within 2 weeks of being off Urso the itch was much milder more bearable and controlled with just taking the Questran Light which is a med I was always on for the itch. The only problem is since I have been off the Urso my LFTs have risen quite a bit which suggests my liver is having to work very hard which in the long run I dont suppose will be too good. Funny thig is am feeling great. Getting bloods done next week so be intersting to see what way LFTS are now. Will hopefully write wee post soon to update all on what LFTS do show. Good luck with making your decision I know its not easy.
Ok, yes i have heard about a lot of people complaining about the itching. I've had no symptoms yet apart from raynauds which may be actually be linked to pcb, but that was how it was discovered. How long since you were diagnosed? Do you suffer from any other conditions linked to pbc?
I was diagnosed in 2002. I also have Raynauds took that aabout 3 yrs ago and about yr ago when felt the fatigue was even more chronic than normal it was discovered my Thyroid was underactive. But hey I am keeping very well despite all that so fear not!
Really so how do you cope with raynauds in the winter? Do you have any tips my hands were so bad the winter just gone im dreading it.
Hi Gemma, I've been diagnosed with PBC for 3 years, but have had raynauds for 21 years (since age 22). Finding some good gloves is essential, and I've found the mittens which are thick wool outside lined with soft fleece inside are the best, which you can pull the mitten bits back to make into fingerless gloves whenever you need to use your fingers (eg. cashpoint machines!) You can put small handwarmers into the gloves too for really cold days. I also have warm boots half a size too big, and wear thick merino wool walking socks with them. I still get raynauds with all this, but not quite so often, and not quite so bad. Hope this helps. Good luck x
Hi Gemma I just try to always wear gloves and thick socks when out and about my fingers and toes get quite numb but thankfully only get odd wee twinges of pain in them so am not too bad. There is a link on here I think to the Raynauds website you mite find useful. Best of luck.
Hi there could I ask everyone on the subject Of raynauds what where your symptoms I've been having very itchy hands lately there driving me mad my palms see to go red. When this happens also I've noticed that if I squeeze something with my fingers the tip goes white then back to normal but it hurts I showed my partner this happening and even he thought it didn't look right so I was. Wondering if this could Be the start of raynauds also a bit like a chilblains feeling does. Anyone thinki i should see my doctor they don't seem to have. A. Clue with pbc stuff well mine dont they tell me i keep imagining my upper right quadrent pain thanks take care everyone
The itch sounds more like itch many of us have with PBC. Raynauds is more to do with poor circulation where fingers and toes getting cold and numb. Drs just advise you to keeep feet and hands warm particularily in cold winter days and do not tend to prescribe medication unless symptoms very severe.
Hi thanks for your reply my fingers have been going white at the ends on the tips it also is painful and seems different from the usual itchy hands I get these episodes can often only happen for twenty minutes then completely disappear I think I may mention it to my liver specialist I'm thinking it could be early signs of raynauds because of the white painful finger tips thanks for your reply x
Hello. Now I did itch a lot more during 2010 prior to diagnose and starting on urso Dec that year. My hands did itch a lot back then but they no longer do.
By any chance how is your blood pressure? You can actually suffer from cold and feet and they go white a bit if your blood pressure is low you know.
My late gran used to go out in winter and her fingers and hands would literally turn blue. She used to have to slowly warm up when she got back home as I remember whilst growing up. She never had any health problems that I can remember (and if she did it was never picked up. She lived until she was 82 and despite losing her mind, bodily wise she was in pretty good shape).
Hello vickyRhodes and welcome.
I'm one of the ones taking PBC who actually do not get diarrhoea not did I at the start of taking the urso Dec 2010 but over time I started having bouts of constipation which I do put down to urso. I never got informed of ANY side-effects whether temporary or long-term from urso when I got given it so you were lucky.
Glad to read that your LFTs have 'greatly improved'. Mine did within 2 mths of starting on urso but don't get disheartened in a few months time if you have a repeat and it hasn't 'greatly improved' more as it can slow down a bit and also at odd times like myself start to climb again. If I was to make a chart of mine over the last 3yrs., you'd see a lovely wavy line! BUT mine are what are now considered normal for some one with PBC.
thanks for that Peridot. I had read in another post that LFTs can fluctuate, so well prepared for that. That's the great thing about the forum is being able to read about other people's experiences, especially as I like to have knowledge as to what I might expect
GemmaO1, I don't think you have to take the ursodiol, but I would advise that you did. I've had this disease for many yrs, and I believe it slows down the progression. My high LFTs started showing up as early and 1987, and finally in 2003 I had a diagnosis and have taken it for the last 10 yrs. My liver still looks good, and not enlarged. Welcome to the group!
Hi Gemma, I live in the USA and I have had PBC since 95. I take Ursidoll and I did not have any side effects from this med. I also have a thyroid disease. I was told years ago that PBC and a thyroid disease are like brother and sister. Ask your doctor about Ursidoll. Your vitamins are also very important , D,E and calcium. You'll be fine. Try and take baths in oatmeal soap, that also helps. If you have witch hazel liquid. Dab it on and will help with the itch. Hang in there.
Hi Gemma,
Welcome! I am very newly diagnosed too - May this year. I have been on Urso for nearly 3 months now - going for check LFTs next week in the hope they have improved a bit. I haven't had any side effects from the medication and no weight gain. I understand your doubts about the medication (I had them too) but if you keep searching, you will find there are some studies that show a marked improvement in the long term with use of urso. A Dutch study by Kuiper and colleagues showed survival for those on Urso in early stages of PBC to be comparable with the general population and that its use in all stages improved prognosis. And there are other studies out there with similar positive results. There have been critiques of some of the studies questioning the benefits of Urso that the dose used may not have been enough.
I guess for me if there is a medication that I can take that does not have any adverse effects and has been found by some to improve prognosis, I am very happy to take it.
Hi Gemma.
Well I was sceptical about taking urso myself at diagnose back in Dec 2010 but decided to 'give it a go' and see. My LFTs did start to come down slowly and then they started to rise slowly, then rise a bit more and then started to come right back down and well since starting urso I have sort of a wavy line on the LFT chart!
Been on urso now for not far off 3 years and have to say that I do know I am taking something every day. I found not long after starting on urso and after a few initial side-effects had gone (lasted 3 months) that I started to get constipated, something I have never suffered from, the opposite - diarrhoea - either.
Seems to have taken all this time for me to feel like I used to do pre-urso and I only know have this 'PBC lark' as I call it due to the fact that early evening I start feeling a tad prickly and then by 11p.m. more often than not these days have the itch with me until 5a.m.
Urso is the ONLY medication for PBC (tho' I consider it a supplement as it is one of the bile acids tho' synthetically produced).
Altho' it's not expected for us with PBC to ever have what is considered a normal LFT after diagnose if the LFTs are abnormal but an acceptable abnormal as there is a scale for PBC for them then by using urso it does aid the body. (Some with PBC do have continuous normal LFTs without needing urso, a rare few apparently have their LFTs return to normal with it.)
It is a grey area I think with regards to using urso. Some it can really help, others it may not but at the end of the day I reckon something is better than nothing.
I know myself the itch has definitely altered a lot in the last few years due to taking urso (I started taking milk thistle daily as well several months ago) and I'm not sure pre-urso if it would have stabilised on its own or not as I can't say now.
From my short experience of not taking urso and then finding out I had PBC a short time after (3 month scale) it is possible for the LFTs to start to come down. I noticed when I got my print-outs after diagnose from the GP Dec 2010 on looking at all the bloods I had taken during 2010, the bloods I had done the day I also had the AMA test showed the LFTs had come down of their own accord but not overly-much but I think once you know you have something it can be a big risk not trying something if you want to give it a go.
Had I never have started to itch early 2010 I'd never have known I had PBC at the time. Fatigue I used to have (that has long since gone but I don't put that down strictly to urso, I made a few life changes), I'd have thought that was due to working over 40 hours full-time every week at the time.
Hi, I am in the us and have been diagnosed for about 2 1/2 yrs. no symptoms as yet and I do not take anything. Anybody else in this position?
Hello dinnyd.
Do you have normal LFTs when bloods are done? There is also one called GGT that is usually abnormal with PBC too.
If you have normal LFTs and as you say are asymptomatic at present then it is more than likely you won't be offered urso unless you start to develop abnormal LFTs.
Have you asked your doctor about any of this as he/she will be able to advise you but that does seem the norm (I'm in UK) with PBC diagnosis, asmyptomatic and pretty normal LFTs don't at the time warrant urso.
Hopefully you might never go any further to developing PBC with symptoms. I have the one sympton of it that is visible, itching (at night) and also abnormal LFTs and GGT. I started itching in early 2010 and by Dec 2010 I had started on urso with a PBC diagnosis.
You can have the heads up now if you try to take even better care of yourself and for me the first abnormal LFT I didn't have any alcohol from then on and do not drink at all but it does not bother me as I wasn't much of a drinker prior to 2010 anyway. If you are a smoker then it is best to try to quit plus I'd try to meep any drugs to a minimum to give your liver less stress.
Hi Peridot,
My LFTs are not normal, but the rise started with chemo for breast cancer many years ago. they tend to go up and down, return to normal , etc. The PBC was diagnosed through a blood test about 2 yrs ago., but I have no other symptoms. An MRI, (I think) was normal and I will have an ultrasound in Sept (6 mo later). because there is only one treatment for PBC I saw no reason for the biopsy.
I am careful about my diet, exercise, and get enough sleep. I also take Milk Thistle. Thanks for your response.
I think where the slowing down of the progression of PBC comes from when we are taking urso is due to the fact that by taking a bile supplement as I call it (it is one part of bile, bile being made up of a few different acids), this aids the system of the digestive process better, thus alleviating more of a strain on the liver.
That is my theory on how it can work. The liver can then start to repair itself a lot better by utilising a synthetic bile we take as urso.
Hi Gemma, I've had similar concerns, and know it is all very scary and feeling completely overwhelmed by everything, people on this forum are great, one person in particular is peridot, I know none of us are doctors or specialists but we are the ones going through this and living with PBC and sometimes know better than the doctors. Use this forum you can get great advice and support.
Good luck with everything
Lynne
I don't know if it would be correct to say that it hasn't been proven to work. As far as i have read, it has been shown to slow the progress of the disease but it doesnt work for everyone. It basically keeps the bile moving through the bile ducts and prevents them from becoming damaged and clogged up.
I have put on a bit of weight but i suspect that is nothing to do with the urso. The weight effects of Urso are thought to be minimal. The only side effect for me is occasional constipation which is easily dealt with.
One thing i noticed a few weeks ago is that when i don't take them i feel rough. I got caught out over the new year - i forgot to order a new prescription and went for the best part of a week without them. By the time i got them again, i was feeling pretty rough.
To be honest, i would rather be a bit heavier than having to worry about whether my liver was going to give up. i am a single parent with 2 children. I think that being around for them and hopefully feeling better is more important to them and me than the size of my belly.
Anyway, since i don't have a social life any more, it doesn't matter that the jeans are getting a bit snug 
A Cochrane review looking at primary biliary cirrhosis found that although ursodeoxycholic acid showed a reduction in liver biochemistry, jaundice, and ascites, it did not decrease mortality or liver transplantation.[4] Ursodiol is the only FDA approved drug to treat primary biliary cirrhosis.
