Have any of you figured out how to keep the... - PBC Foundation
Have any of you figured out how to keep the nauseous/bloating feeling away that Urso creates? Do certain foods make you feel worse?
I always take with or just after food. If I forget them at meal times I make sure I eat a biscuit or some thing first. Never without. Xx
Hello Betsyjc3.
How long have you been taking urso? If it is relatively new to you then perhaps this is a side-effect of urso that is temporary. When I was diagnosed Dec 2010 and started urso for the first few months I had bloating and heartburn and started to be constipated. i nearly gave up taking the urso due to bad heartburn later in the day as never suffered any of these 3 symptons prior to taking urso. I persevered due to better LFTs before the 3 month mark of the urso and the symptons vanished. I still get constipated from time to time which I do know is down to urso.
I have always taken the urso with food myself. I started on one 300mg at morning and one 300mg that I originally took around 9p.m. at night. I used to take it with a drink and a few dry biscuits like Rich Tea we have in the UK at night so I wasn't taking it on a n empty stomach. I did switch the 2nd urso to just after the evening meal as opposed to around 9p.m. as I thought it might be better and it did prove better.
I can't say I've had any problems with certain foods myself but I have always found for many many years that I don't enjoy eating fried foods, take-away foods, etc and think for me I got used to not eating an overload of fat since I left home over 30yrs ago now. I do think that with PBC a diet that contains an unnecessary amount of fat can perhaps cause havoc due to the fact that bile is needed to break down fats in the system and with PBC pre-diagnosis and at diagnose we are maybe struggling with a compromised biliary system due to bile leaking into the liver due to our bile ducts being under attack with PBC.
I am taking 1000mgs. I'm in my 3rd week of Urso now and extremely frustrated with the impact it is having on my daily routine. I am exhausted 90% percent of the time. Nauseous 50% of the time. My legs feel like lead. The itching, headaches and lack of appetite are things I could live with, but feeling like crap all of the time is making me question whether or not this is worth it.
I understand what is happening in my liver. I'm almost at the point where I don't care. I felt fine before the diagnosis. I was happy and functioning 4 weeks ago. Now, because of lab numbers and a biopsy, my entire world has become frustrating and lonely.
I'm not convinced that this is the right course.
Hello Betsyjc3.
Have you tried reducing the urso to find out if you feel better and then gradually upping the dosage to what you state you are supposed to take daily.
It might be better doing it this way for yourself.
On the whole urso is pretty well-tolerated.
If you mention to your doctor as I did about 8wks following starting on urso when I was still getting bad heartburn later in the day which I never had prior to urso and a bit of bloating plus thought the itching was that bit worse, he said had I stopped taking them to find out how I then felt.
The side-effects do tend to be temporary but I also think in yourself you are also experiencing that shock of being informed you have PBC.
Although I itched during 2010, I did continue under the assumption throughout that year to just think I was rundown and itching was something temporary that would vanish but it never did.
At times in the last few years on urso I've thought that if I was to stop itching at some point I'd feel I had nothing wrong with me and I wouldn't need the urso but thinking now and moreso on reading about people newly-diagnosed with PBC I doubt I would cease taking it as I know that I have PBC and it is not something that will go away regardless. If I do get back to normal LFTs in time (just had some pretty good results recently) and fortunate to stop itching then I'll still crack on with life knowing I have PBC.
At the end of the day as the gastro said to me in the very early days following taking urso, it is entirely up to me regards taking urso or not if I dont' feel they are doing much good. There are no guarantees taking it but i know for myself I think I wouldn't be fairing as well if I didn't.
I found changing from capsules to caplets helped as they come in larger doses and recommend taking at bedtime. I ran out of caplets and had to resort to capsules, the bloating returned!!
I certainly agree with your comment about capsules. I've not had urso in capsules altho' Ursogal apparently also come in this form too. Always had the chalky white tablets, last 2 pharmas, one my current, don't think they are film-coated as they look matt on appearance and the ones loose in bottles I had last yr ended up with a bottle with white dust round it. I find these can stick in the throat but no sid-effects.
It's more than likely what the capsule is made up of that is the cause. I refer to these sort of tablets as also having an intake of plastic!
Thanks for the responses.
It had occurred to that less fat would make this better, but in the last two days, I haven't wanted to eat anything.
I'm in the first week with Urso. Last night I halved my dose and woke up feeling a little better.
My frustration is, I was feeling great before the diagnosis. Now that they are treating me for something that never bothered me, I feel horrible.
Sorry to read that you are experiencing problems Betsyjc3.
Me neither wanted to take any tablets when I was diagnosed with PBC and I did want to sack them within a few weeks due to how I felt at the beginning but I think sometimes it can be a case of mind over matter here. You read side-effects and hear of them and then feel you have them or might develop them and in my case saw urso as a bad thing in the beginning.
I know for me my PBC was diagnosed when I started with the itch. I had probably started with it 'a few years previously' according to the hospital consultant on my return to see him following diagnosis. I did stumble across PBC months prior to diagnosis but never said anything, hoped I just had something that would vanish but unfortunately didn't of course.
It is up to you wehther to currently persevere with the urso or not. I did comment to the hospital consultant 2mths into urso about how I was feeling as I found the itch for me did feel worse after starting urso. He said that it was my choice but given I had good LFTs in a short space of time I decided to press on and I did start to settle not that long after.
I know urso does alter the system slightly. I know that any unused urso just flushes out of the system in faeces and know that at odd times I know this myself
You stated it never bothered you pre-urso but do you know what prompted a doctor to prescribe urso. Was it due to LFTs starting to rise as it can be found that if one is asymptomatic that is with no symptoms and have normal LFTs but do have diagnosed PBC and not had urso prior, then it seems the norm to just monitor the LFTs and any symptoms that might appear before starting on urso. Of course I'm no doctor and things seem to vary greatly from town to town in the UK and other countries.
I go through periods where I find I don't want to eat, usually for me comes odd evening meal times. I do find I can eat my best at breakfast and lunchtime and then I taper of so I take it for me it is normal. I did lose a bit of weight pre-urso but have continued to maintain a good steady level weightwise despite. I often eat if I feel hungry as I sometimes do find I feel hungry and empty. I don't eat just for the sake of it.
No problems here. I always take mine after breakfast and after my evening meal which is usually around 7.00pm. Been taking them since February 2011 (3x250mg) per day. Two in the morning, one in the evening and always will water.
I have been on urso since jan2014. I take 1250ml and have always taken them after my evening meal and had no side effects. As others have said try them with food. I would not change your dosage without talking to your doctor. Hope this helps. Casapino 5-3.
Hi Betsyjc I know how you feel.i can't tolerate capsules at all .bloating til I hurt.better on white tablets but can only take450mg should be on a 1000 mg.however from time to time for a week or so I don't take them and feel amazing.i have told consultant and he said if I feel better then he's happy to take me off them.he said why struggle for next twenty years .lifes about quality.stick with them for a while but maybe you are one of those people who simply cannot tolerate them well.i def am.good luck
Just wondering...maybe if you feel better when you stop taking them for a week...its because your LFTs have been lowered by your taking the med and a week of not taking them is not enough to get them back up? Maybe if you stop them you will feel better for a while and then start getting tired if your LFTs increase? I often wonder this because my dr mentions getting off the Urso after a few years to see how my body reacts....I am possibly prediagnosis, they cant confirm that I have or dont have the disease.
Hi.i don't have any symptoms of Pbc def not fatigue(thank goodness)I was only diagnosed due to lymph nodes on pancreas which after lots of scans was told that it is common in Pbc.my ggt has been marginally high for years never much tho.when first diagnosed my doc have me the choice of going on urso as my bloods were comparatively low so for first few months never took anything .a diff consultant recommended I went on them.never felt as ill in my life as I did on capsules and it was only by coming on this site I found others who were allergic to fillers.told him I would try tablets instead(he told me I could also have liquid)much better on tablets and instantly my bloods were in normal range tho I know that's no indication as to how things are progressing.just done a few days off again will start again tomorrow for several weeks.it seems to work for me.everything normal and I feel good so il prob carry on for a while.i guess at the back of my head I know that what one tablet'cures' it also can cause.prob my way of pretending I'm ok.thanks for replying
I confess I couldn't take urso either. I was prescribed it last year as my AIH was exhibiting some bile duct symptoms (but tested negative for PBC). I started on 500mg a day (with the intention to build up to 1000mg) and felt extremely nauseous and unwell from day 1. This feeling increased as the days went by then the crippling headaches/migraines started. I struggled on but then had to admit defeat.
I tried again on 250mg but same thing happened. Then switched to the tablets as people here suggested that may help and started on a really low dose. When same symptoms appeared on just 75mg a day I (and my doctor) decided it just wasn't for me!
So I guess I am saying do try lots of experimenting with times and types (capsules versus tablets etc) and don't be frightened of building up the dose slowly but at the end of the day like all meds it just doesn't suit some of us.
Ann
PS After all of that my readings resolved on their own!
Hello AIHAnn.
Yes it is possible for LFTs to drop of their own accord. I know I have been on urso since diagnosis Dec 2010 but I noticed on getting my print out of all my bloods following diagnosis that in a 3mth period between Aug and Nov 2010 prior to the AMA test for PBC and WITHOUT any urso then my LFTs did actually drop naturally somewhat. So it can be done but I suppose once you know and your LFTs are still abnormal....
And of course I am on immunosuppressants for the AIH. Anyway consultant is convinced I don't have PBC so thinks it is just the AIH affecting my bile ducts in a weird way. He thought urso may help but clearly it isn't the med for me.
Thinking about it I suppose it does figure that if one has AIH and the liver is inflammed that would perhaps in turn cause strain on bile ducts.
Hi, I have been on Urso since it came out that it could slow the process of PBC, I am up to 1250mg daily. 5 @ 250mg. I take three in the morning after breakfast and two after dinner w/my milkthistle.........the other meds I take throughout the day, i.e. water pills and vitamins. I do think most of the bloating is a diet thing. I personally cannot eat alot of starchy stuff or red meats. Also, keep exercising, I think that along w/water keeps things moving if you know what I mean
I do tend to agree there sistergoldenhair re bloating and it being linked to diet. Also let's not forget that in females bloating can be also due to hormones at that time in the month. I always felt a bit of tummy blow up that time of the month and still do even though I am definitely going through the change (I am 50). But the tummy blow up due to hormones could be related to the female anatomy I reckon there.
I watched an interesting programme on tv several days ago about which country in the world had the best diet for longevity. It was highly interesting and I do reckon that a more Westernised diet can be responsible for bloating.
There was an experiment in one country where the folks had a high grain diet with plenthy of fruit and veg and only tended to eat meat once a week if that but they were adequately healthy. I can't recall the country exactly but think it was India. One of the villagers was asked to eat sweetcorn as was the presenter and they were doing so to find out how quick sweetcorn would travel through the system (as it is known that sweetcorn outer casings cannot be digested). The villager was said to have an excellent colon due to the speed food passed through his body. Interestingly the countries with healthy diets did still consume products that did contain gluten or wheat. Apparently it was said that white rice can be bad in a way if not eaten alongside vegetables as it gives one a huge sugar rush.
HI Betsy, I ditched bread and now only eat wheat free. I used to look 8 months pregnant. I still get some bloating but not as much.
I always take with food. Otherwise I get nauseous. I hope this helps!
