PBC

[Dese]

I found out about 3 months ago that I have PBC and taking tablets. I get the worse heartburn ever and a pain so bad in my stomach that I have to go bed take hours for it to calm down. I can't be bothered to eat cook I don't fancy anything at the moment. Can anyone tell if you feel like this sometimes, no point me going to my doctor he knows nothing about illness I have to tell him things. Happy New Year. X

[Twinkle26]

Hi Dese, I'm sorry your suffering right now, I'm still new to this myself but the PBC foundation are very good with clear information.

Hope it eases up soon.

[Hidden in reply to Twinkle26]

Also try looking on Liver North site, they offer a free dvd on PBC that they can post to you. I'll pop on the website here. I got a copy several years ago but only watched part of it, my husband on the other hand watched it all.

livernorth.org.uk/

Like PBC Foundation you can also request their newsletter but they are put online when they are published. They tend to cover a lot on PBC,

[Twinkle26 in reply to Hidden]

Hi Peridot, thanks for the info I have requested a DVD.

Thanks again.

[Hidden]

Hello Dese.

I was diagnosed with PBC Dec 2010 after starting to itch March that year.

I had never been one for taking any medications or over-the-counter meds either as my motto has always been if I can live without it could be better. Then along came PBC and was informed that I had to take this ursodeoxycholic acid (urso) for life as it is the only thing currently available to try to slow down the progression of PBC and possibly avoid certain other problems occurring and also to improve on any existing symptons.

I started taking the urso and for the first few months I encountered heartburn that I never had pre-urso. I also started to feel a bit bloated too and I did think for several months the itch felt worse than it was. I was going to give up but after my first bloods were taken about 8 weeks later on urso there was a pretty impressive improvement so I decided to plod on.

The heartburn vanished just after the 3 months on taking it, bloating subsided and the itch felt like it had in the beginning. I did start to feel constipated and have found that I have had to adjust my diet since taking urso to deal with this.

I have experimented with the urso in the last 5 years and found that it is best to take it of a morning just after finishing breakfast and then following meals. I started by taking urso twice daily (2 x 300mgs) but have tried it all at once morning (itched really badly several hours later, not the norm so that doesn't seem a good idea for me), spaced out in 4 doses (I was switched to 4 x 150mgs a couple years ago as the 300mgs were withdrawn) and it seems better in divided doses for me. I think with plenty of food it does seem to settle better. I do think the urso does need a bit of time for the system to get used to the addition of further bile (urso being a component of bile acid).

My itching over time altered and now I tend to itch later at night, get prickles odd times in the day but nothing like back in 2010 when the itch was 24/7. I did have fatigue in 2010 but sometime during 2011 that vanished and I haven't seemed to have been inflicted with it since. I do get tired in late afternoon sometime due to broken sleep during the night because of itching.

In the early days after diagnosis I can remember going through a phase of not being bothered myself. Days when I didn't have to be anywhere (usually Sundays) I could stay in bed until later in the day, not bothering with the urso or anything to eat. I think it is part of the process of it all sinking in about having PBC.

I got to a stage then that I had PBC and nothing can change it unless some cure comes along so I decided I'd not bother about thinking about what it could become in time as I don't want to know. I would deal with things as and when they came along and then thought why should I worry about what might be when it might never be and I would miss out on trying to get on with life. I was 46 at diagnosis and now I am not far off being 52. My motto is to enjoy life, make those memories whilst I can do.

[amt50 in reply to Hidden]

I've only taken one tablet this morning and have had heartburn all afternoon Im thinking of not taking the dose tonight not sure I can cope with no sleep as already tired

[Hidden in reply to amt50]

Hello amt50.

Have you tried taking a calcium with Vit D a couple hours after when you get heartburn? It is the same formulation as the Rennies here in the UK for indigestion and heartburn but without the artificial flavours, etc. This is what I take from time to time if I feel with a bit of heartburn.

If you are new to the urso then perhaps you could start to build them up. I took the recommended prescribed dose back in Dec 2010 and persevered. I now think it was the right thing to do as without I doubt my bloodwork would have improved in the first 6wks I took urso prior to the bloods being re-taken.

Have you asked if you can try a different urso at all? Some of the fillers can play havoc as they all seem to vary (I have checked up on the ones in the UK previously).

2 years ago I was on Urdox by Wockhardt without any problems after the first few months. These were withdrawn so I was given Destolit (Norgine co) 150mg white tablets. These were fine but branded. Then I was given brown pharmacy bottles with their labels and these were generics of urso by a company Galen. I started to have bad heartburn and it persisted after the first 3 months on these, so much so I had to return to my GP and request that I had the Destolit ones written on the prescription (in the UK the prescriptions tend to be written generically (ursodeoxycholic acid) so a pharmacy can give you what they supply that is either generic (cheaper to NHS) or a branded. I have since had the prescription wrote branded and have had no problems at all.

[amt50 in reply to Hidden]

Thank you for your reply and the information about calcium and vitamin C, I've since took another tablet and was ok so put it down to what I had eaten I must make note of what I eat.

Very interesting comments about the urso and I have seen it mentioned before about branded/non branded however I am still a little confused about the difference. I was prescribed ursodeoxycholic acid and the box states ursofalk manufactured by Dr Falk Pharma GmbH are these branded or non branded?

Thanks for your help

[Hidden in reply to amt50]

Hello amt50.

Your tablets sound like the branded ones. I was prescribed 600mgs daily when I was diagnosed and what is knows as Dr. Falk doesn't come in my mgs (I believe it is 250mgs and a new 500mgs - I did read about this one in PBC Foundation's Bear Facts newsletter awhile ago).

If you find the sites online that are linked to the NHS if in the UK (there is one known as MIMs that medics use, it notes new meds, withdrawn meds., etc) you can find out the different ursodeoxycholic acid on there. The generic tends to just be known as "ursodeoxycholic acid" and branded with the name (I used to take Urdox by Wockhardt. The name was on the box and then one day it had vanished and became "urso..." but the tablets and formulations I discovered were the same, they had started to be produced generically (it's all about money!).

What I found reading Patient Info Leaflets (you can find online from the manufacturer if you know it) is that it is the fillers that are used in the tablets or capsules that can vary greatly between each other. Ones I got that did cause me heartburn that persisted a couple years ago was a generic but a different pharmaceutical to the one that I have currently that is a branded tablet.

[amt50 in reply to Hidden]

Thank you for your reply very useful.

I must remember to take them, never had to take medication before so its a new process.

Many thanks

[Dese]

Thankyou are your post that's helped me. I do try and live a normal live its the days I can't get out of bed and the pain I keep getting that's keeping bringing me back to this illness. I know nothing about and its seems a lot of professional ie my GP also knows nothing.

[teddybear7]

They did an endoscopy straight away & put me on omeprozal for my heart burn best thing ever. Have you seen a hospital specialist yey if not you should do & discuss it with them. X

[Jo53]

I take lanzoprazole as I have a hernia. I used to get really bad heartburn but since taking it - about 3 years now- the heartburn has stopped completely

[cazer]

Ifound urso actually helpef stomach pain.but after 16yrs taking it started to get pain again i.had agastroscopy and they discovered ulcers so have had meds for that... now healed.so if your pain doesnt settle down might b worth going to docs as some tjings are easily curable and shouldnt b blamed om.pbc.hope it calms .p.s try plainer food less fat not too.much rich stuff might help.cazer

[Dese in reply to cazer]

Hello. Thanks for that years old ago I had a stomach ulcer maybe that's Came back the pain is so bad. I'm newly diagnosed only 3 months with PBC. I had blood tests for over a year showing I have it then I was sent to a liver doctor. I was put in urso I go back in April to see if they have helped.

[cazer in reply to Dese]

Dont kmow why but ive always made too.much acid even before i knew i had pbc.sounds like could b ulcer again...its a nasty pain isnt it.i do know that urso is no problem to take with ulcers..

Get it checked out prob best idea.x cazer