Is urso the only treatment ?

[meandmypbc]

hi,

Has anyone out there taken anything other than urso for pbc ?

I cant tolerate it , very bad nausea and vomitting and have to go back to the consultant !!

[Hidden]

Hello meandmypbc.

The only thing I can think of you could try would be milk thistle.

I can't say if that would be the answer though as I am taking urso.

The only time I sometimes feel nauseous is around that time of the month but on the whole urso has never made me feel like this or be sick. I did get heartburn at the start of taking urso and also bloating but that righted itself within a few months.

I have since on 2 occasions had these symptons return and know it has been the urso as Sept 2012 I started to feel like this again and on checking the tablet packaging I suddenly noticed that the brand name had gone from the box, I had started on generics. The symptons were temporary so I guessed it might be a case the fillers could be made up differently. I recently felt the same sympton of heartburn recently and once again I had had the tablets changed due to 300mg recall, the 150mg are a different brand now and I know the fillers in these are different from the previous urso I had.

Have you tried at all a switch of urso? Just a suggestion, at the start of taking urso have you taken it in smaller doses throughout the day and eat little and often to see how you went. I know for me taking the urso all in one go doesn't seem to be the right thing to do at all. I have read you can take it in various ways, all at one, 4 times a day, twice, etc. I did earlier this year myself tried taking all the urso with breakfast but that lasted a few days as I had the most awful itching within a couple hours of taking it, something I normally do not have. I've not yet tried taking all the urso last thing at night, for me I do not think that is the way to go.

Given I had heartburn and bloating in the early days of urso and it took 3 months to disappear could it possibly be that you've not taken it long enough. Did you have a blood test whilst taking the urso to see if there were any LFT changes as I know for me under 3 months into starting on urso having the first LFT which showed pretty good results, that is what made me continue. I did think in the first 3 months back in the early days of diagnose the itching too seemed worse but it has settled considerably since taking urso.

[meandmypbc]

The specialist nurse said that I was not to take it until I saw the consultant in a few weeks and that there may be something else I can try instead of urso....believe me the symptoms I had were debilatating even on a reduced dose , I feel a bit better now , the headaches and vomitting have gone but the nausea , pain in my ribs and lightheadedness still remain, after 7 days of stopping it.

I thought urso was the only drug to control pbc until I was told otherwise.

I will let you all know what I am offered ...thanks for your reply, but I would rather let pbc take its course than go through that again,

[Jaycee in reply to meandmypbc]

Hi there, I too can't take the Urso, my LFT'S have been good for the last year , so I don't seem to be suffering from not being on it, I had the same symptoms as yourself, it was horrendous, I don't have the itch, just the dreaded tiredness,I see a new consultant in November so I'll ask if there is an alternative to Urso, my last consultant refused to believe it was the Urso causing the problems, he was treating the illness, not the patient,please let me know if you hear of any alternative treatments,I'm with you in that I'd rather let the pbc take its course than take these pills again, Hope you keep getting better, Take care.

[meandmypbc in reply to Jaycee]

So refreshing to hear from you...jaycee..from someone who agrees with me...the only reason I am so tired is from the stress and taking urso ...I will know how I cope when I go back to work.i was so much better not knowing about this horrible pbc , but I do know now and would find it a lot easier to cope with when this urso gets out of my system !!! You take care and I will let you know what they offer me..thanks !! X

[highwood in reply to meandmypbc]

Hi meandmypbc, I went to see gp yesterday and told her the Urso was making me ill. Explained all my symptons to her, told her my liver functions have been elevated since 2006 Dx May 2013, never had any of these horrible symptons till i started Urso 4mths ago. She told me to come off it till i come back from USA. She is writing to Consultant.

I would rather have quality of life than quantity especially feeling the way I do.

Take care hope all goes well for you. God Bless, Sue x

[Val02]

Hi sorry to hear you have had such a rough time. URSO is the only drug for PBC I'm afraid.

Take care - I hope you can work it out.

[Hidden]

Yes, as Val02 has stated here, Urso is apparently the ONLY medication that I know of that can be taken to aid in PBC.

I know there are some trial out there with regards to PBC but as far as I understand there is nothing else.

I know certain meds like Questran for eg can break down cholesterol as that is what it was originally dispensed for but it doesn't work like ursodeoxycholic acid does in the system.

Urso is supposed to be 'well-tolerated' (not my words) as I have read on various sites and literature. I know on my original Urdox patient leaflet nausea was cited as a possible side-effect but there's nothing except diarrhoea on the recent tablet switch I've had (Ursogal).

[Hidden]

I am on Ursodiol capsule and have not experienced any side affects. I take mg twice a day. I also take Milk Thistle 175 mg three times a day, an over the counter Herbal supplement prescribed by my Specialist. You might inquire about taking the Milk Thistle, but Urso is still the only medication available for PBC. I hope you start to feel better.

[Hidden in reply to Hidden]

that would be 300 mg of the Ursodiol twice a day

[meandmypbc in reply to Hidden]

Thanks for that I will certainly ask my specialist when I see them x

[salvatore]

You need to take your Urso. It is the only FDA approved med. I don't know your history, but the body usually will start to tolerate Urso. Fenofibrate is also effective in reducing Alk phos and ALT/AST. This is a little know fact. Not all doctors know this. Talk to your doctor about this and go prepared will some literature. Also, a new med that is in phase 3 trial should be availalbe by the end of next year if all goes well. It is called Obeticholic acid. This will be the first medication approved for PBC in 25 years. So between these 3 medications, PBC should be controllable for > 90% of individuals. People will be able to have a normal life and life span. People will die with PBC not because of PBC. But please take your Urso. It is a normal bile acid of the body.

[meandmypbc in reply to salvatore]

Thank you salvatore, but I dont understand your message...take urso !! Then telling me about other drugs available.?

I certainly thank you for giving me the info on other drugs, and it is nice to know this, and I will look them up and go armed with this info.

I dont mean to be funny ..but...you dont know my situation and the toxicities I have suffered and am still suffering from urso.

SO I will make an informed choice when the time comes.

[Hidden in reply to salvatore]

I looked on patient.co.uk for Fenofibrate and it seems to be given to patients who cannot tolerate other medications but I think reading between the lines it is for controlling of cholesterol. I think it would help reducing certain components in the LFTs.

I have done a bit of snooping regards the OCA (obeticholic acid) and it seems so far there has been a bit of a mixed reaction. I found a site where some of the findings were reported, it is gastroendonews.com and I put in 'obeticholic acid side effects' into Google where I came across this site that used mainly white women over 55. Itching was the cause for some to abandon the trial. Apparently obeticholic acid is a semi-bile acid but please do not ask me what that means exactly as I couldn't tell you. I also realised this study has also been called INT747 too which I recall reading about in PBC Foundation newsletter.

[Librarianlady]

Do they think obeticholic acid will help with itching and symptoms?

[meandmypbc in reply to Librarianlady]

Hi,

If you google it it will tell you I am sure x

[Hidden in reply to Librarianlady]

As far as I have read about this 'acid' is that it is still in trial stages. Apparently if I am right without having to check as I did read about it on either PBC Foundation newsletter or LiverNorth this is actually being trialled to perhaps be used in conjuction with urso. It has been found tho' that early trials have actually caused itching in participants.

[ho11y]

I was diagnosed with PBC in 2008, I have never been able to tolerate Urso, in any dose, so I stopped taking it. I also have never suffered from any symptoms of PBC either. In April this year, I was diagnosed with autoimmune hepatitis overlap (with the PBC) and was told this could be a reason as to why I could not tolerate the Urso.

[meandmypbc in reply to ho11y]

Hi, holly,

Wow I will certainly add that one to my list !!

How long did it take for the side effects of taking urso to calm down ?

I only took them for a week..and its been 7 days since I stopped and I am still have nausea, hot flushes, blurred vision and cramps in my ribs !!

[ho11y in reply to meandmypbc]

I'm so sorry to hear that, it's hard to say with me, because I was okay taking Urso for two or three days at the most, then to put it politely ! I could'nt go to the toilet for a week or so. So it maybe took up to two weeks to get my system back to "normal" ! Can I ask, are you taking other medication at the moment ? And if it's not being to rude, can I ask how old you are. The reason for the first question is - I am on prednisolone (steroids) and mercaptopurine to get me off the steroids, some of the side effects you mention are the same as I get being on the steroids. And as for your age, I am 50, and started going through the menopause last year, and I had hot flushes (not pleasant) oddly enough the steroids have stopped them. Also remember if you are taking other medication, remember everything is processed through your liver, so the nature of the medication might be changed, if you see what I mean !

[meandmypbc in reply to ho11y]

No other meds holly, and I am 52 and went through the menopause at 45, so that was well over years ago.

I dont even take paracetamol ! I hate taking tablets anyway cause I work with them everyday !and I would be worried about the process through my liver.

I guess I will have to go with the flow and hope these symptoms subside.

[ho11y in reply to meandmypbc]

Goodness me, I am so sorry I can't help any further, it sounds like you have had a really bad reaction to the Urso. The only thing I can suggest is speak to a pharmacist, which is what I do when I have any questions regarding medication. I was speaking to one today regarding my medication, because I have been left high and dry by my consultant (long story!) but he said, that not every side effect gets put on the leaflets, but if you report all the side effects to your doctor (GP) they seemingly report it back to the makers of the drug. Problem being we are all individuals and it effects everybody differently, which does not help you. I hope you feel better soon x

[meandmypbc in reply to ho11y]

Thank you , seeing consultant in a few weeks I will let you know what tge outcome is x

[littlemo in reply to meandmypbc]

Hi there sorry to hear you are feeling so unwell on the Urso there is a lot of debate around the use of Urso in PBC but it is the ONLY drug prescribed for PBC in the hope that it will slow down the progression of the disease. I am pretty sceptical about it myself as I went off it a yr ago as a last resort for my intractible itch as I was going for transplant assessment purely because the itch was making my life utterly miserable and nothing prescribed or other remedies I had used over the years to control the itch were working anymore. So to cut a very long story short I went off it but my liver has deteriorated since coming off it going by the LFTS however when I asked my consultant about going back on it he agreed with my previous consultant that it probably would not make any rreal difference. To be honest I as glad as didnt want to go back on it as from an itch point of view I feel much better off it than I did for the 10yrs I was on it! If I were you I would hold off taking it until you see your consultant in couple of weeks. When were you daignosed? Do you know what stage of PBC you are at?

[Hidden in reply to littlemo]

Me too littlemo.

I still remain sceptical about urso and I've been taking it 3yrs December.

I think with the urso knowing it may not be the answer long-term along with the fact that in my case it was only the itch that I started with (I did suffer fatigue in the early days but I was working full-time 6 days a wk and making changes in my life just prior to diagnose (Dec 2010) seemed to vanish this). Given I still itch I think really the only thing that has kept me on urso is the blood results.

The itch has curbed somewhat in that I don't itch part of the day like I used to but I am pretty much the same at night. I did in in early days of urso start tapering off with the itch and some nights I never had it but that has been some time now since I managed not to itch at night.

I know the one thing that I long thought of was that some day PBC patients on urso might be changed to something different due to research and having to be switched to something else as that is now the new way to treat PBC. I would still remain sceptical as I still think there isn't enough thought going in to how to possible eradicate our immune system of making antibodies that are causing this problem in the first place. All there seems at present is a form of bile acid (urso) that adds to the system to aid digestion thus helping the liver to relax a bit. I think if we knew how PBC started in the first place we might be able to help ourselves even better but at present we don't.

Hope you are doing well at the moment.

[littlemo in reply to Hidden]

Hi Peridot on a hopeful note I was speaking to Colette in PBC foundation one day and she said that there is a drug being trialed just for the itch and it will be mentioned in the next edition of the Bear Facts. Please God it will become available soon as like yourself I would not know (at least not until about a yr ago with the fatigue starting again) that I had PBC if it was not for the itch.

In general I am keeping fairly well the itch is fairly mild and tolerable most days and well controlled through taking my two doses of Questran before and after breakfast, by eating healthily small and often and by drinking plenty of water. I still work part time and with good support from my wonderful fiance I am keeping on top of things at home and looking after our 6yr old son and 17yr old daughter. Sadly though this disease being the ironic one that it is my LFTS are up the creek and I have to go for a biopsy and endoscopy soon to see what way my liver is I will write a post after these are done. I would not recommend anyone going off the Urso as i think as its the only drug for the disease and for the majority of folks it seems to be well tolerated. I just personally would like to see more current research done into it. Hope you are keeping well yourself. Bfn.

[scthompson in reply to littlemo]

Hello, I’m just wondering how your pbc is doing, 5 years later???

[exy21 in reply to ho11y]

I was diagnosed in 2007 and I'm exactly the same. Pbc and auto hep, at same time and can't tolerate urso or anything else he tried me on. Only on azathioprine 100mg for hep.

[scthompson in reply to exy21]

How are you doing, 5 years later???

[exy21 in reply to scthompson]

My levels are roughly the same. Don't go up/down much. Down to 50mg azath. GI happy so all good.

[Ursoforte]

I signed up here to tell that not all urso drugs are the same. I can easily tolerate the one made in Canada for instance but was very sick on another. And if you can take just half the dose it's better than none.