Unable to take Urso

[Jaycee]

Hi, I was diagnosed about 2 years ago after a liver biopsy, I was also diagnosed with osteoporosis at he same time, I was put on Urso and meds for the Osteo. about a year ago I began to feel ill, very bad stomach problems, realised it was the Urso, causing the problem, anyone else unable to tolerate Urso, and is there an alternative as I am not taking anything at the moment. I also have underactive thyroid and tinnitus, any advice would be welcome.

[Hidden]

Hello Jaycee,

Apparently there are some of us who feel we are unable to take urso after PC diagnose.

The only comment I can make is that when I was originally started on urso I went through several months of feeling bloated and suffered bad heartburn in the evening, things I had never prior to urso. When I orig started taking the 2 tablets a day, I was taking the final one around 9p.m., hours after I had evening meal but having it with a little snack. Knowing it was the urso causing this I was sceptical with regards to continuing of it.

I then decided I would take the final tablet with my evening meal and slowly that all settled. Was the improving LFTs that gave me the decision to keep on taking the tablets.

Maybe you are taking anymore meds that are somehow clashing? You didn't say.

Also, have you perhaps thought of maybe taking the dosage in smaller doses spread out further, know someone else on this site had opted for that. Or is it possible to switch to a different brand as you never know.

Are your LFTs any different since diagnose when you did persevere with the urso a yr and then came off them?

In the last but one Bear Facts, a lady stopped taking the urso and started taking milk thistle and said she'd felt fine and been pretty much good.

[Jaycee in reply to Hidden]

Hi Peridot, Since stopping the Urso, my LFT's are still good,I don't know about AMI even what it is, I have been given very little info from anyone, I only take meds for underactive thyroid and lanzoprozole, I dont really have any symptoms apart from the fatigue,good days and bad days, and an ache where my liver is, I think I'm lucky,I was taking 4 tabs of Urso 500mg a day plus Alendronic Acid for the osteoporosis,(a lot of acid) and I think over time it just became too much acid for my stomach,I see my consultant next month so I'll be asking a lot more questions. Thankyou for taking the time to reply, I appreciate it,Regards

[Val02 in reply to Hidden]

I didnt react to URSO but the Alendronic Acid made ill after taking it. Doctor took me off the Alendronic Acid and put me Risedronate - no problems since.

[toohey]

Hi Jaycee

I don't take Urso instead I take LIVERTONE cap or powder and it has dramatically help me. This is the corner stone of treatment by Dr Sandra CABOT - an Australian GP /Naturopath who now specialises with every thing LIVER, espcially diet. Do your own research and see what you think. She has written many books , unlike traditional doctors who you have to prise any information out of. Dr Cabot explains everything in plain english.

Good luck. Toohey

[Hidden in reply to toohey]

Hello Toohey,

I just googled livertone cap and as far as I can see it is a combination of dandelion, artichoke, lecithin, thistle etc. All these you can get from food naturally, something is always lost when it is made into a pill. I did take milk thistle for a while but to be honest if you read published medical papers on some herbs it would scare you, eg; end stage liver disease caused by comfrey to name one. Although milk thistle still seems to be harmless. Many years ago I worked in a homeopathic farmacy and was amazed at how much money the shop made selling herbs and promises to people, now of course there is a lot more control of herbal medicines. Every doctor I have seen since having liver problems has asked me 'are you taking any herbal remedies'. Having said all that, it would be interesting to know how it's helping you. Have your liver enzymes come down? Diet change and advice is probably the most useful and helpful for liver disease, doctors don't seem to give any. My specialist told me to get all vitamins from my food, naturally. He only told me to take calcium and vitamin D. Also, vitamins can be good and needed for some liver diseases but bad for others.

[toohey in reply to Hidden]

Hi Prades,

Livertone returned my LVT levels all back to my baseline of normal within 3 months. Yes it is "just a herb" but it is a mixture of essential ones, especially selenium. Selelnium use to be found in good levels in the ground until recently and now it is almost depleted. This is one of the most critically important minerals for the immune system. I have been fortunate that I have not had to change much about my diet except drop cow's milk and use Soy instead because I have always followed a excellent diet high in fruit and vegs and no highly processed food except cheese and bread. Don't drink or smoke, and yet I still contracted PBC.

Your comment about "you should get your vitamins from the food.... in an ideal world that is right, but out food today contains dramatically lower leverls of all essential vitamins than 50 yrs ago. Also on that point, this is a good rule when one is healthy but when ones system is under duress, especially an auto immune condition it is extremely difficult to get the necessary extra benefit from just food without extra suplements.

You commented that herbal company's make a fortune, obviously you have not seen the obscene profits that drug companies make from prescription drugs. Are you aware how much Urso cost for a month, here in Aust it is $480 a month!!!!. I am a retired registered nurse of 25 yrs and I have seen so much illness and death from prescription drug errors and the mixing of these drugs and I can truly say I have never seen anyone come in with problems from herbal medications. But the worst thing about prescription drugs is the side effects, and then what do the doctors do, they prescribe another drug to counter the new problem. I suffered a major auto immune storm and have 4 conditions when I was previously well. I was bobmarded with prescription drugs and I had to work damn hard to get off 90% after they had done the inital job. That is another problem with P/D doctors leave you on them indefinately without ever reviewing if they are needed.

My health has dramatically picked up since I dispensed with most of mine. But you must have confidence that you have done your homework and you no longer need them.

You picked out comfrey as an example, yes that is true, but it is well documented about it's cancergenic capabilites.....that is why it is excellent as a compress on a bruise etc in short small doses because it promots tissue regrowth. Are any of the prescription drugs on the market have warnings to the same effect. I know of so many and yet not one documents it on their label.

My specialised is now using the regime I followed because he has seen the benefits, espcially the added Vit E & C.

That is why I said everyone needs to do their own research.

Hope this is of help

[zipitydoo]

Have you mentioned this to your liver doctor ? Just wondering as there is a trial of another product going on at the moment for people who cannot take the urso and it might be worth looking into to see if you would be a suitable candidate.

[bink]

Hi there Jaycee , I too have PBC was stage end 1 early 2 when diagnosed 3 years ago ~ i was put on Urso 300 mg 3 times a day and for two years seemed to do fine with it then the end of June i became jaundice and was feeling pretty crappy ~ worse fatigue i have had so far and stomache pain and swelling in liver area so they did another liver biopsy and it came back stage 3 . I was referred to the mayo clinic in Jacksonville Fla for evaluation and the specialist says i am falling into a group of people that the Urso just isnt helping any more and she says that with in the next 2-5 years ( depending on how fast it progressed ) i will require a transplant . i also have just been diagnosed with osteopina ( the starting of osteoparosis but have talked with Dr. and am going to try exercise and advil due to the meds having so many bad side effects and i seem to be sensitive to meds . I am being told there is no other med in the USA for the PBC .

[Jaycee]

Thank you for your reply, very interesting, I wish I could get someone to tell me what stage I am at, no one seems to know, but that will be my priority now, to find that out.Keep well

[Hidden in reply to Jaycee]

Hello again Jaycee.

Apparently staging can be done by liver biopsy BUT given there are blood tests and ultrasound scans normally it can be gauged just as good.

I personally will not undertake a biopsy (I did reply to another posting several days ago, similiar reply, was about biopsies. Check out my profile and look what I replied to to find if you want to). I've not had a biopsy as yet as when I had the antibodies test for PBC (the AMA) that proved positive (high titre) as wasn't deemed necessary tho' this is England and it seems quite the norm in the USA.

I think once you starting hitting further problems with PBC along the way then that is when one could be progressing further.

[Hidden]

I also got ill when taking alendronic acid and urso so I stopped taking them, I feel fine now apart from itching and joint pain, but you can't have everything. I have just been to the oseoporosis clinic and she ( young person ) started to tell me that I didn't have osteoporosis and That I had arthritus after a while I started to get annoyed as I knew I had so I said " are you sure you have MY medical records there as your wrong" guess what they had someone elses mixed in with my records, These people are going to kill someone one day, they now want me to start injecting something into my stomach every day for the Osteo...........I only had one thing to say to them.

[Jaycee in reply to Hidden]

Hi Linda, I also stopped taking all meds, have restarted for thyroid and indigestion but nothing else, I stopped taking them about 4 months ago and all LFT'S since then have been normal???? I am lucky not having the itch, the only thing I have is the fatigue but that could be because of my diet ( which is rubbish),So, you don't know who is right and who is wrong, you just have to go with what;s right for you, I know when I stopped the meds I felt as if I had gotten my life back, so much better so nothing will persuede me to go back on them

[Hidden in reply to Jaycee]

Thats exactly how I feel as though I am getting my life back, I have tried to re start taking them a few times but I always feel afloat with too much bile and then throw up bile before I eat it's as though my stomach doesn't want it.

[Hidden]

Hiya Linda,

How you doing?

Out of interest, have you had any further LFTs since ceasing the urso?

I have been taking urso now for not far off 2yrs and had a bit of down last yr with the LFTs but then good improvement May this yr but other than that I think I am fair in saying altho' the urso is helping there, well seems to be, the itching hasn't altered very much and I still have periods of where I feel tired if had a restless night due to itch normally. I myself could find if I was no longer using urso then I prb wouldn't feel different and the only thing that would prob show would be the LFTs if they are on the wane.

Can't recall how old you said you were once on site but osteo is apparently something that a lot of women in particular can get following the menopause and folks with PBC are apparently in a higher group to possibly get.

I thought arthiritis was inflamed joints and osteo was crumbling bones? I have cracking knees and wrists currently but have for quite some time. Fortunately I don't get pain in them and know mine are down to wear and tear over the yrs with a lot of lifting, carrying and manual work I have done at times.

That new to me, injections into stomach for osteo.

[Hidden in reply to Hidden]

Hi, I didn't think urso had anything whatsoever to do with stopping itching as far as I know it's to help to digest your food or so I am told.

I still haven't had a gastro appointment and wouldn't know anyway as they never tell me.

I have never heard of the stomach injection either so I am a bit wary, they also offered me a six monthly injection or should I say that lasts 6 months and I flatly refused I don't want them giving me anything that could make me ill for 6 months, they also said they didn't really know what affect these could have in a person with PBC. I also had an early hysterectomy at 40. I don't suppose I am like you as you seem to ask a lot of questions were as I don't. maybe I should start.

[bink in reply to Hidden]

Hi Linda , the Urso is suppose to stop the progression on the PBC that is what they tell me and there is a different med. they can give you for the itching but i have been lucky with Benadryl so far . I too have never heard of stomach injections for osteo .

[Junolee in reply to bink]

Yes, from what I understand the urso is supposed to slow the damage to the bile ducts, but obviously is works differently for people just as the disease seems to be different with everybody. I have heard some people say it helped the itch but I read on the research for it that it doesn't always work for this and doesn't claim to.

[Hidden in reply to Junolee]

Yes this is what I have read about urso, because we are taking a bile acid in the form of a tablet, it goes straight to the stomach and starts with digestion there as the gallbladder normally releases bile when we have eaten. Because we have bile duct damage, I expect the gallbladder hasn't a full capacity of bile if some is draining into the liver.

The urso that has broken down then apparently travels via the bloodstream back to the liver to be broken down after use as a waste as that is the norm for bile after it has been used.

That is apparently the theory as I also have read that it's not fully understood how urso actually works.

I think from my gatherings here if the itch is alleviated somewhat with urso usage as mine has altered in a better way (or I'd prob think again about taking urso), that to me means that there has to be less of a used by-product travelling back thru our system to the liver as that is when the itching is supposed to occur.

Figures it makes sense as I get up in the morn as a perfectly NORMAL person, it is normally early evening after a day's intake of food and digestion that I start to feel a bit strange and then the itch comes along several hrs later.

[Hidden in reply to bink]

HI LInda.

What is Benadryl? Majority of users on this site with PBC and the itch tend to mention they take Questran (or cholesterymine).

[Hidden in reply to Hidden]

Oops, sorry I mean the posting here by bink.

[Hidden]

Hello again Linda.

I think you are right with regards to itching and urso. I know through this site some have been fortunate to start on urso and then their itch vanishes.

If you had of been at my first hosp appt - Feb 2011 - after I was diagnosed with PBC you'd have thought that urso was quite some miracle tablet to take! I was led to believe the itching would almost vanish which I now know isn't right tho' it has improved somewhat by the fact that I don't feel it at odd intervals during the day like I originally did. NIght is still the same as always basically.

Bile apparently acts like a detergent on fats and given our bile ducts are damaged or destroyed, then bile doesn't filter thru the same as it did, hence the urso to replace. I have read that bile is made up of different acids (that is how I translate it anyway) and urso is supposed to be the one that is most helpful so-to-speak.

One big problem I have found with regards to asking certain questions to the medical profession is that they don't seem to like it, well there are odd doctors out there who will listen, I've found majority don't. Just because I've not been to med school doesn't mean I can't read all the big words and then find out a few things for myself.

I will always stick by the same opinion and this is through bad experiences years ago (with a late husband), at the end of the day we ourselves (and our partners) know exactly what is going on with it all the time, a doctor only sees a patient briefly and if they don't listen and reckon they know what to do for the best........?

[Hidden in reply to Hidden]

I agree with you, they don't like you to ask, when I take the urso I feel awash with bile and it put's me off eating, On my appointment when I was diagnosed I don't think they had read up on it enough as they told me nothing and gave me nothing apart from he said you could have it for years and I said and what happens then does it just go on it's own? and he just said no , here is a leaflet for you to read I just sant in the car on the way home thinking " could have it for years" to me thats one hell of a big could.

the osteo injection is called Forsteo and after having a good read I don't like the sound of the side effects, they have also sent me a leaflet on Protelos, don't like the look of that either as it can cause DVT.

[Hidden]

Hiya again linda.

Well when I got informed by the GP that the hospital doctor had wrote to him (Dec 2010) he then printed off a leaflet on PBC not knowing about it and I told him I didn't want it as I'd already seen the NHS site on it and I had found some better ones (as I discovered PBC mths prior, never mentioned it along the way as didn't think I could have anything like this).

When I saw the hospital doctor again 3mths later he also told me I 'had probably had it a few years'. I sometimes wish I'd never known. Had I not have developed the itch during 2010 then I would never have been any wiser.

I only started taking the urso when prescribed as I thought it might be worth it to maybe GREATLY improve the itch or rid me of it for some time but have to say it's improved some but not what I was expecting.