How many people have been living with PBC, 15 years or longer? Does URSO still help or is it possible to develop antibodies to this medication?
Who has been living with PBC, over 15 years... - PBC Foundation
Who has been living with PBC, over 15 years? Is it possible to develop antibodies to URSO after many years?
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WendyMarie
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Hi Wendy Marie,
I was diagnosed with PBC in 2000 during a check up for a heart murmur. No symptons -complete shock to be told I had a terminal illness with no known cause or cure! Anyway I joined the PBC Foundation, learned the facts and realised that PBC affects different people in different ways. I turned to the positive. I knew I had PBC. I have regular check ups and scans, bone density scans (no biopsy) and anything else that the consultant asks me to have. Just think of the number of people that don`t know that they have some sort of illness and only find out when it is too late. I am in control, I`m slim ,eat sensibly rest if I have over done it (without guilt) and as I told you have a very active life.
Your question was how long have people had PBC.
In my 30`s I couldn`t give blood as I needed what I had I was told (?) but was too busy to bother finding out more. In my 40/50`s I went to the doctor with agonising pains that moved to different areas - wrists, arms shoulders - all very odd but nothing could be done and over the years I woke up in the night to be sick, went back to sleep ,sick again ,sleep and so on until nothing was left and green bile came up. So I reckon I have had PBC for years. But I started Urso in March 2000 ( 750mg) my last sick bout was in Oct 2000 and although I have weak wrists and combined with being clumsy I drop things or knock them over I have not had those pains for years. So I think Urso is doing a good job for me.
I have said before on this site that I think my Mother had PBC from the symptons she had in the years I nursed her before she died at 92.
I know from reading other people`s problems that I am very lucky with my PBC. In the past I have been through a car windscreen, had a collapsed lung, had an ovary removed and last year had a spur of bone removed from my backbone so it has not all been plain sailing. But I am very determined that what ever comes my way I can cope with it. Now I am off to a Panto with my Granchildren!
Oidra
I have only recently been diagnosed. Once the initial shock wore off, I read every piece of information that I could get my hands on. As far as I can tell, the Urso significantly slows down the progress of PBC. As I understand it, people live with PBC for a very long time once they start treatment. I am fairly sure that I read somewhere that our life expectancy, once on treatment is pretty 'normal'.
I have never read anything about people developing antibodies to Urso. As far as I understand it, Urso is basically only a version of bile salts.
If you have noticed a change in your response to Urso, it might be worth having a chat with your doctor. i know that it is prescribed according to weight (and probably other things too). If your weight has changed since you started taking it, you might need to have your dose adjusted up or down.
Also, if you are showing new symptoms or discomfort, it is better to talk to your doctor, just in case it is not pbc related. Sometimes, we just relate everything to PBC when we might be just suffering from a common or garden illness.
I had plain bog standard tonsillitis a few weeks ago. At first I was googling PBC and sore throats - thinking that i had developed scary new PBC symptoms. In the end, a traditional course of antibiotics had me back to normalish in a few days.
Thank you SC. I am not on meds yet. I have been diagnosed, but have biopsy Jan.8. I want to know if there are many people who have lived with PBC 15 or more years.Do most live this long or more? I realize each person's immune system is different, so there is no predicting how rapid or slow PBC will progress. I know, from also having MS, that your body can develop antibodies to interferon. I am wondering if the same can happen with Urso, after many yrs. How are you responding to Urso? I hope to start after jan.14, when I get my results from biopsy. I think I have had this since '06, due to elevated ALP, but doctors said it was probably just a fatty liver & did nothing, til my gastro doc did AMA test.
Hi WendyMarie an interesting question. I have my doubts about Urso. I was on it more or less from diagnosis in 2002 until Aug 2012. I have never had normal lfts since diagnosis in 2002 despite being prescribed Urso and taking it religioulsly since diagnosis, all that time apart from when I was put off it during the first trimester of my last pregnancy back in 2006 ( read my blogg for all details of my experience then) my liver failed for while but when I went back on Urso it stabilised again though still my lfts were abnormal. Mine were always 2-3 times what is considered to be the normal range. Since coming off the urso in August I feel brilliant and the itch( which was so debiltating I was almost going to end up being considered for transplant because of it ) is so much better and well controlled with the Questran and other measures have also taken over yrs to control itch... However my LFTS are very high in fact about double my normal which leads me to conclude that whilst the Urso does not seem to suit me personally,it does probably work in helping the liver and may slow down the progression of PBC but a lot more research needs to be done to conclusively deduce that it does or does not. It is now almost 12yrs since I took the first symptoms of PBC but I was only diagnosed in 2002 after a year of suffering with the symptoms. I have two friends (through finding out I had PBC) that both ended up with transplants after approx 15yrs from diagnosis one was on Urso all the time the other only had it for a couple of weeks in those 15yrs which is why I do doubt its proclaimed ability to slow down the progression of PBC however again I say much more research needed. Hope that's helpful. Take care. Bfn.
Thank you very much for your reply. It is very interesting about the 2 friends with transplants, one on Urso the entire 15 yrs., the other,had it only a couple of weeks. It makes me think the explanation is that their immune systems were so very different. The friend that only took Urso a few weeks, had a much slower progression than the one that took meds the entire time.(she experience a much more rapid progression.) I have had MS for 26 yrs. & most people I know with MS are walking with canes or wheelchairs & have had many attacks in a few yrs. I have only had 2, in 26 yrs.& I am fine. So, my Dr. says I have very slow progression, so far, that is. It can always change to rapid progression in the blink of an eye. The interferon IM injections I took for 12 yrs. may have helped, but its a known fact, they only slow progression by 33%, it really depends on your immune system. So I will take the Urso, not sure how it effective it will be, but I am afraid no to.
Also, I have yet to talk to my neurologist, concerning the MS,since this recent PBC diagnosis, but my gastro Dr. is wondering if its possible that while I was on interferon for 12 yrs., that it helped hold the PBC at bay. The neuro Dr. took me off of it 16 months ago, since I am in remission & have no new brain lesions on the latest MRI. The interferon suppressed the immune system, to slow the progression. If I do have new lesions on my next yearly MRI, I have no idea how he will want to treat the MS, since interferons can harm the liver. Therefore, I can no longer take interferon, since I now have a liver disease.
I know I've been living with PBC more than 15 yrs, it's just that in 97, the dr. didn't know which disease it was. I started the ursodiol in 2003 and haven't had a problem with it, although upping the dose to 1500mg bothered my stomach and I came back to taking 1000mg.
Honestly, I'm sure I had this disease before these years for my ALk was high in 1993 and I didn't have any other problems that would have caused it. As of this last blood workup, my ALK is the lowest I've seen it in years. It's now under 200.
Magnolia
Hi Magnolia, Thank you SO much for your reply, about how long you have had PBC. I obtained all blood test & found that my ALP has been 150-200, since 2006! Not sure about before '05, since I could not get those tests. I have no symptons. So for 8 yrs. doctors have never mentioned the ALP, & I had NO idea there was a problem, until my gastro Dr. did the AMA test which was positive. I am having a biopsy Jan.8.I am SO worried about what stage, because my Dr. said IF PBC is left untreated for 3 or more yrs., it could develop into liver cancer or full blown cirrohsis. So I am thinking that could be my case, since it was undiagnosed all these yrs. When you tell me you had high ALP for 10 yrs. before meds, it makes me have more hope.
P.s. Re the cancer thing this is I would say is quite unlikely as you would have many other symptoms. Also if you had cirrhosis your symptoms would be much more chronic and I would say it would have been picked up long before now. You dr sounds like a bit of an alarmist giving you the very worst case scenarios. Re Alp mine was over 1200 back in 2006 and I have never been told I have cirrhosis. In relation to PBC the bloods they watch most closely are the bilirubin and the albumen the rest of the lfts they dont worry about so much. Hope that puts your mind at rest. Good luck take care. Bfn
Hi
I appreciate that I am replying to a post 3 years ago however I have only just been diagnosed at the end of Nov 2015 and I am terrified and reading a lot of posts on here.... I am hoping you are still a member and can reply.
I am concerned about your comment.... 'because my Dr. said IF PBC is left untreated for 3 or more yrs., it could develop into liver cancer or full blown cirrohsis' the consultant said that I had high LFT for the last ten years but I have never been sent for full liver screening or tested for the AMA positive until Oct 2015 so I am panicking that I have had this for years untreated. I can even recall going to the Dr's 3 years ago with itching but was never tested and the itching just went, but is now back with a vengeance.
Hope you are well
Hello WendyMarie, I see a few years have passed since you posted this. I hope you are doing well. I just want to share my experience in the hope you will worry less. At the age of 43 in 1997 nearly 20 years ago I was diagnosed with 4th Stage PBC which is Cirrohsis . My Alk was then OVER 1,100 yes 1,100. Urso was not synthetic then and was still being produced by the cruelty of the Black Bears in China so I refused to take anything even though I was told I was terminal. In fact I was told I probably had 5 to 10 years (which I believe I shouldn't have been told). So about a year later Ursodioxychloric Acid was synthetically made and I stared taking it and it did help the itching as I used to rip my skin raw!! Although it didn't take all the itching away (Liquid Fish Oil) I found has done that trick completely😀 Now at the age of 63 my Alk is the lowest it has ever been in the 400's . I feel fabulous and have pretty much from the time I put PBC in the bin in my mind. I take Urso, and live an extremely happy life! I believe I am well and I meditate and visualise myself well which balances the Urso. Oh, the one other thing I swear by are minerals! Combination 12 helps release fatigue.
So go ahead my sweet and live a long and HAPPY HEALTHY LIFE.
Take your drug and ignore your illness and it will not take over your life. I hope this long answer helps you in some way.😍😍😍😍
Thank you so much for your replay Mary Lou. Yes, hearing your PBC experience, your words & attitude, give me hope & helps to calm my fears. What an inspiration!
WendyMarie
Mary lou, thank you so much for posting everything that you just said. I was diagnosed about 3 months ago and it was just from a random liver enzyme testing. I am 45 and I'm a mom of a 12 year old boy. The first thing that happened was I immediately thought that this was a death sentence. The nurse even told me when I told her I was freaking out that you're not going to die today you're not going to die 6 months from now and she talked about liver transplants.all I can say is, she was totally wrong for saying anything like that. It scared the crap out of me. She also told me to Google it. Which was tge absolute worst thing to say to someone like me. I've Googled everything possible about how long I'm going to live. I'm taking Urso . I admit I have forgotten sometimes to take it but pretty much I've been taking it constantly since it was prescribed. I want to see my son grow up, I want to be a grandma, I don't want to leave him without a mother. Just the thought of not being around kills me. So when I read your comment it made me feel so much better. I know everybody's different but it gave me a little bit of Hope.
Hello R Todd,
The first thing that I would suggest is live each day focussing on loving the people around you and absolutely do not worry about your diagnosis . You are in great hands with your Urso. If you itch, take the high strength Liqiud fish Oil by Ethical Nutrients. For fatigue I suggest Schuessler Tissue Salts Combination 12 and considering I actually have Cirhorris (and many persons with PBC don't actually go on to get the Cirhorris ) I am doing amazing!! My last post said I was down to 400 in my Alk, now it is 300!! It has taken many years, but I'm alive and well and you my sweet should just go on living a life of joy not worry.
You know for a 63 yr old taking 4 Urso tablets is certainly not hard to live with and many of my younger friends take more pills than me for one thing or another.
You are young and have beautiful son. Enjoy him and enjoy your life.😘🌹🌷🌺💐
I don't remember if I thanked you Wendy Marie, so I will now, sorry about delay.
I had a MRI with dye scan year before last, and my liver has no sign of cirrhosis yet. It's not enlarged or anything. Do not have any sign of cancer, for the Dr. was looking for that. My bile numbers are not elevated, as of yet. I did start itching last year, started the Cholestramyine, but have stopped it now., and for months now I have not itched.
I make sure I don't get in a way I would be too hot, for it can start it up, also do all I can for the dry skin of winter. There is a lotion called Sarna which helps the itch, also the drug neurontin helps it, if and when you ever itch. I actually had an elevated GGT in 1987, and could have had this that long. I never drank alcohol or had any kind of drugs back then, and very seldon took any kind of med.to have caused an elevation of any kind.
It seems your dr.has some more to learn about this disease, it progresses very slow in most all people. What he said to you, doesn't sound right to me. When I was diagnosed in 2003 my Alk Phosphatase was 500 and now is around 200. My total bilirubin is only 0.03, which it has to be over 1.0 to be elevated. I have saw two other elevations of one called AST and ALT years ago in my LFT's but the last few years they are normal. I haven't had symptoms until this past year either, except for some periods of fatigue.
It's on record, I've had this for 16 years, but I know it goes back before that, for I happen to have lab work test from1987 and 1993. The ALK was 204 and the Gamma GT was 150 in 1993. It was not gall bladder problems either for I still have my gall bladder! Don't worry, ask for a sedative for the biopsy. Go home and rest afterwards. The main problem I had with it was my BP dropped too low on the first one and they kept me overnight. You are going to be all right! Certainly don't be worrying about cancer! It's not likely! Write back after your biopsy and let me kow how you did, it might a few days after before the dr. finds out the stage. Any other questions, just ask, I'll tell you anything I can. Praying for us all.
Magnolia
Hello WendyMarie.
Well I have wondered myself about using Urso since Dec 2010 when I was started on it after having a positive AMA and diagnose of PBC.
I have wondered if perhaps the body would get used to the Urso and perhaps start somehow fighting back. But then in another trail of thought I just consider Urso as a sort of supplement. Like a person with diabetes who uses insulin or one with Addison's Disease takes steroids to compensate for lack of something the body normally produces, I look on it as adding bile to the system. Obviously I'm a bit dubious, probably because Urso is an artificial substance in itself but I think that whilst the bloods are good in my case presently, then I personally can't see me thinking further ahead, just take it as it comes as no use in worrying about something that may never develop further.
PS Oidra, noticed you stated that PBC is 'terminal' but technically it isn't tho' it can be. That is why it goes down as a long-term condition and that is why too it is that grey area when it comes to anyone wanting to perhaps claim a form of disability benefit (I've no experience of that and may or may not ever do). A lot of us with PBC can remain in a pretty much stable condition whereas a few of us may continue to progress further with it, some are that fortunate that their PBC can become in a sort of remissive state where it stops and never continues to progress any further tho' any symptons you experience (ie itching) will more than likely always be there.
WendyMarie in reply to
Thank you for your reply Peridot. I WILL take the Urso, because I am afraid not to. I just hope my body responds. I have not started yet, until after Jan.14, when I get results from biopsy, which if Jan.8. My doctor told me it is made from the bile of bears, so therefore it is a natural substance. I have not read this, its only what my gastro Dr. said. He says the natural bear bile, helps push through the bile ducts to clear away toxins, that cause imflamation, thus over time causes the scarring. Do you know anything about this from reading or your Dr.? Do you tolerate the Urso well?
in reply to WendyMarie
Hello WendyMarie,
Hope you do OK on Urso when you start taking. I did suffer heartburn and a bit of bloating initially after starting it just over 2yrs ago but I decided to persevere until I received the first blood result after starting. Within a few months these symptons did vanish though the itching took considerably longer to lessen (shame Urso couldn't rid me of it completely).
Actually reading the PBC Foundation magazine prior to diagnose, Urso isn't actually 'natural' as such. It was originally discovered using bear bile that it was of some aid but it was them synthesized in a laboratory so it is technically artificial tho' that's the norm now for almost all drugs (unless they are herbal I expect).
From what I have read over and over prior to diagnose (I stumbled across PBC myself after my first abnormal LFT in early 2010, hoped I didn't have PBC but never mentioned to the GP, probably because I did think it was something that would simply just go away with a bit more time (the itching that is)), by adding Urso to the system it helps the bile flow. So this as I interpret helps digestion as with PBC and the bile ducts slowly starting to disappear over time, giving us a compromised digestive system.
My GP and even the gastro at the hospital didn't seem to fill me in much after diagnose. I managed to rattle the GP when I was asked to go in to see him Dec 2010 as he wanted to give me some medication. He didn't seem to think me going in to see him was of any urgency and the receptionist who rang to inform me he wanted to see me, she then gave me an appt for the following wk which was 6 days away with the weekend in-between. (My husband said it wasn't good enough after i asked what meds and was informed Urso. I knew then the outcome PBC so wanted to know sooner rather than later. We got an appt within the hr as it was teatime when I got the call.) The GP simply printed some info about PBC from the web whilst I was there but I told him I didn't require it, I had seen that but had found info elsewhere which was a bit more explanatory. He hadn't actually heard of this condition. The gastro simply decided I didn't need to know more about it as I had heard of PBC and knew 'a bit' about it being a long-term condition. He added that in a nutshell no-one knows how it progresses but it is slowly and that some patients do eventually require transplant, with Urso these days, a lot continue with a normal life.
Last Sept when I picked up the next script for Urso I didn't notice at the time the brand name of URDOX had been taken from the packaging and tablet foils and wouldn't have noticed if I hadn't started to feel like I did when I originally started on it Dec 2010. That prompted me out of curiosity to look at the batch and I discovered then that these are now the cheaper to the NHS tablets of which I think the filler is slightly different. It has taken another few months for these symptons to disappear and that is all I can put it down to. I started on Urso one at morning and one at night (about 9p.m) Dec 2010 and had good results but then over time I suddenly decided it would be better to take one with breakfast and then one just after the evening meal. I find for me this is best.
Oidra in reply to
Hi Peridot,
I agree with you - I don`t think the word "terminal" should ever be used but in 2000 this is exactly what I was told by my Doctor and repeated by my specialist at the hospital.As I was in the best of health at the time it was rather a shock! I hope in recent years, people have been told they have PBC in a better way.
Oidra
in reply to Oidra
Yes I agree that terminology has changed in the medical profession over the years and 2000 seems a long time ago now!
Likewise I too was as I thought in tip-top condition prior to starting with the itch in 2010.
The very new GP I saw back in 2010, he hadn't actually heard about PBC and up until the diagnose from the hospital end of 2010, he had been insistent as time passed by prior to going to the hospital 6mths after I originally went to him that I was to have a liver biopsy. I had stumbled across PBC myself after my first abnormal LFT earlier 2010 and knew that diagnose could be made by the antibodies test so I pushed any mention of biopsies out of my mind. I do think that had I not been given diagnose of PBC that year then I would have more than likely agreed to a biopsy to pinpoint what could be up as by Oct 2010 I had been itching for 7mths and it wasn't getting any better.
Mary-Lou in reply to
Liquid fish oil is amazing and has stopped my itching.
I appreciate your info Peridot. Think about me in the a.m.....I have the biopsy @ 8:00. 
Hi WendyMarie,
think I will have missed you due to time differences but wanted to wish you luck foe tomorrow on ypur biopsy.
Ann
(Nannan)
Aww...how sweet of you! Thank you very much. The radiology nurse @ the hospital called me today with instructions for the procedure, She says I will be in a "twilight" sleep, & should not remember anything, or very little. So, pain meds & sedative in the IV, plus the Lorazapam I am allowed to take an hour before that....I should be fine. You have no idea, how much it means to me, for you to send me this note today.
Hi again Wendy-Marie best of luck for tomorrow. You have a lot to put up with with having M.S. and P.B.C. I count myself very lucky to just have the PBC and an underactive thyroid. In reading over your comments I think you have hit the nail on the head re my two friends whom have had transplants one of them I think must have had a lowered immune system alright as she did tell me that she was put on steroids to try to suppress her immune system as a last ditch attempt to slow down the progression (this incidentally was the one who was always on the urso and also ironically the younger of the two she was just 40 when she had her transplant) the other woman was never on the urso and was 62 I think when she had her transplant but she reckons that she had the disease much longer than 15yrs but it was just 15yrs diagnosed when she had her transplant. At this moment I hasten to add that PBC progressing to someone needing a transplsnt is the rare outcome as opposed to the norm and my hepatotogists over the years have emphasized this time and time again. In the U.K. at least not in N.Ireland or in my experience we are not told what stage we are at in regards to PBC staging. I have never asked to be honest nowadays specially recently I very much go on how I am feeling rather than getting hung up on the blood readings etc. If I feel under the weather I just go get my bloods done and if need be make an appointment to see my GP and take it from there. Read my blogg if you haven't already I have not let this disease rule my life and on the most try to forget I have it but I do listen to my body and rest when I need to and try to keep fit and eat healthily. Take care and try not to worry. Let us know how you get on. I have never had a biopsy so be interested to hear your experience.BFN
YAY, ITS OVER!!!!! No pain at all. Please read my blog I wrote on here today.
where is your blog posted please?
Well I'm in the same boat as you because I'm having mine on Thurs but I can't have any sedation I asked but was told no. Treatment is free in the UK but you have what they say and when they say, the nurse I spoke to was lovely though and said not to worry they would look after me . lol
I will be thinking of you Ann. I will let you know how it goes tomorrow. I sent you a private message, did you get it yet? (I think it was private, not sure)
Should nt you be asleep? what time is it in the US? it's 22.22 in the UK I sent you an FB friend request x
It is only 5:30 or 17:30 hrs. here. I just sent you a message too. We are 6 hours behind you in time.
I am delighted you got through it ok Wendy Marie, good woman. Nannan, good luck Thursday. I didn't have sedation either, just a numbing like at the dentist. In a way it suits me better as I like knowing what is happening and I found the whole procedure fascinating. No pain at all just discomfort and kinda suspended feeling, hard to explain. As I said to Wendy Marie I am sure you have been through much worse. x
in reply to Junolee
Well Junolee I have to say I couldn't have put that better with regards to your biopsy (I haven't had one, no intentions on either).
I'm of one who likes to know what is going on with medics and I'd have done the same as yourself so I'd be in some control.
I also say this as for me having anything like sedation/general anaesthetic can ultimately mean that one has a longer duration in hospital and that def does not do for me.
Hello again WendyMarie.
I was just thinking today when I read something about some drug out there (forgets which now) that it is thought your body could get used to and if there is a short break from it you don't seem to get any worse. Think cancer was in question.
Given you recently mentioned antibodies and was it possible to become somehow immune to the urso, I had thought of all this before.
I think I'll stick with what I have said on here prior to this posting, I reckon on urso being like a supplement and addition to the system as in a bile compound. Different from your body getting used to say a certain painkiller.
WendyMarie in reply to
.You may be right about that, Peridot. After 12 yrs. of being on interferon IM injections, for my MS, I had to be tested for antibodies, because its very likely your body will develop antibodies to the interferon & therefore, it will no longer work. That is what made me think of becoming immune to the Urso. Interferon Beta 1-A is made from the Ovarian cells of Chinese hamsters with additives made from human plasma, so is considered made mostly from natural substance. So, I have been off the interferon for 16 months now. My internist Dr. wonders, if the interferon has suppressed the PBC all these years. I had elevated ALP for many yrs, but no AMA, now I have both. Interesting thought.
Hello Wendy Marie
I have been living with PBC for over 15 years I had a biopsy in 2000 which confirmmed PBC. I was already on URSO because of AMA levels and was fortunate in being diagnosed at an early stage. My blood tests were analysed to rule out other conditions Other people have posted information already. URSO is known to slow down the progress of the disease. I have never heard about it being associated with antibodies. Indeed I believe that the symptoms /conditions I was having the tests for improved after I started on Urso and mentioned this to my consultant I also kept a positive out look and am a 10 year survior from breast cancer. I keep my weight stable have a good diet and although the disease is progressing I am a lot better off than many other sufferers. I also feel that the monitoring of the condition is first class where I live in Aberdeenshire. Regular Blood tests, ultrasound scans and check ups with Liver specialist nurse.
I also know someone who had the condition and had a liver transplant 14+ years ago. She drew the short straw in that she developed the disease in her 'new' liver but she is still living life to the full!!
Hi, I was diagnosed with pbc in 1992.....I was not offered medication then. A few years back it was suggested I try Urso but it made me very sick, I do now have cirhossis but am able to take Urso and lfts are more stable. My platelets however are very low. I do see the change and feel not wonderful as various physical things have happened re cirhossis ....but I had 24 years almost sympton free. And for that I am lucky as I am sure many of you in this site will be.
Thanks for your response, Bobbycat. Are you now on a TP list? I wish you the best.
