Hello. I just started taking a divided dose of 1000mg of ursodiol. While I hadn't been exactly well for several months, the Urso seems to have made matters much worse. Has anyone else suffered terrible gastrointestinal distress when beginning to take this medication?
I do take several other medications, which my doctor reviewed before starting me on the Urso. I've been taking my doses as instructed, 500mg in the morning with breakfast and again at bedtime with fat-free milk or a small bite of food.
After 4 days everything I eat seems to cause diarrhea, cramping, vomiting and the nighttime itching and daytime fatigue have both worsened. Please tell me this is a temporary adjustment to the medication and things will improve.
Thanks for any information you might provide. I do have a call into my physician's assistant since the reaction doesn't seem to be improving.
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Carol60
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Apart from feeling tired before being diagnosed in dec. I felt fit and healthy. Started urso andand I felt ill for 4-6 weeks, the fact I was stressed probably didn't help. Certain foods I suddenly couldn't eat. Upset tummy etc. But after this time I felt great. Better than before I knew I had a incurable condition.
Hello. URSO can cause upset when you first start taking it but it does usually settle down once your body gets used to it. When I first started, my doctor started me on a half dose for a month before going up to the full amount to avoid side effects. That might be something to discuss with your doctor?
I was diagnosed with PBC recently and prescribed 500mg 3 times a day. I thought I'd start by only taking one a day which I did for 4 days. On the fourth day I got a terrible pain through my back that came into my stomach, severe pain around the bottom of my ribs and terrible dihorea, I stopped taking it and felt ill for about three days, like I'd been kicked in the guts and sticky. I told my doctor who has halved the dose for me to 250mg. I'm going to try again, starting low and building up. If it happens again I will go back to him. It doesn't suit everyone and I'm already on a lot of heart medication, so it does make me wonder if it's worth it.
Hi, cclcnal7 (can I just call you C? It's good to know I'm not alone and that others had the same horrible reaction to starting Urso (misery loves company?) I'd begun to worry it was something going wrong other than just the Urso.
I visited my doctor on Wednesday who decided to titer the dose over a month-long period (one-quarter dose for a week, one-half for a week and so on) which he hopes will help. He did say, very grumpily, that a small percentage of people simply cannot tolerate the Urso...which means the disease will progress until you need a transplant. He referred me to a specialist who knows more about PBC; since he knows about the disease but has very few patients with the condition. I'll be better off in the hands of someone who keeps current on treatments, outcomes, testing, etc. I hate to admit this, but I'm also reassured that the new physician is female since this disease is predominantly seen in women.
I've taken the one-quarter dose since Wednesday night. Taking it at bedtime with skim milk and a cracker along with plenty of water. By Saturday I was back in full-blown gastric distress (vomiting, diarrhea, lower back pain radiating to under my left shoulder blade) and was so fatigued could barely function. But I'm continuing to take the Urso because it is essential to slowing or stopping progression; no desire whatsoever to progress to an even worse state of fatigue, itching, or other terrible symptoms...much less a liver transplant.
I hope you are feeling better and can also slowly build tolerance to the Urso. From the current research and posts here it seems to be the only way to stop the progression to full-blown liver failure. The Food & Drug Administration in the US has fast-tracked a new drug for treatment of NASH, PBC, and PCS but I'm not really all that keen on being part of the clinical trial stage unless I have no other choice. Here's the link for the announcement:
I take and tolerate 500 mg 3x daily. My diarrhoea only started after my gastric bypass years after starting urso. I have not had a solid bowel motion since. It did help settle the inflammation that was happening all through my joints and tendons but that has flared again more recently.
I hope you get some answers as i am also aware i possibly would not be here any more if not for urso.
Thanks for replying and confirming that one can live with the side effects if necessary.
I have a friend who had a gastric bypass and has lost over 75 pounds. She's nearly to the point now where they are talking of removing the "band" so she can begin to eat solid foods again. It doesn't seem like her diarrhea has caused her pain or cramping; just that it's part of digesting a primarily liquid or soft diet she's been on. She can literally only eat about a quarter-cup of food at a time without serious problems.
The reaction I've been having to the Urso is quite different and painful. The cramping and pain progresses from stomach to bowel to my lower back then under the shoulder blade. It really isn't something I can easily tolerate for long. But I'm hoping the titered dosage will allow me to slowly build tolerance since it really is the only treatment proved to work on PBC.
Thanks again for your honest response. Knowing more about the range of experiences people have with PBC is valuable to me. Best regards.
Carol--
Hello Carol60.
I only had itching and at the time fatigue back in 2010 pre-diagnosis of PBC December 2010. I started on the urso and did encounter as few side-effects - heartburn, bloating and started with constipation plus I did think the itch got worse for awhile. this for me went on for the first 3 months and then vanished. The constipation persisted so I had to re-adjust my diet as I never had this pre-diagnosis.
I think in the very early days of taking any medication it is possible there will be initial side-effects. Not pleasant I know.
I was prescribed 600mgs of the urso daily and was going to be given it in 4 x 150mgs but I informed the GP that I'd not remember to take as I've always been against medications and never prone to taking anything pre-2010. I started off on 2 x 300mgs per day and over the last few years I've experimented with the urso but still find for me that taking 300mgs just as I am about to finish breakfast with my food and then the remaining around 7p.m. which is about an hour after finishing the evening meal seems to suffice for me.
Might be in your case that taking the urso 4 times per day may help in the early days. then once established you could just take twice a day. If you read the patient info leaflet you might have received with the urso if it is branded they are in the packet (if generic - that is pharmacy labelled - then ask the pharmacist for one, they will print you one out or you can check online and look at it there as they tend to be on), you will see that a common side-effect of the urso seems to be diarrhoea. Seems to be that on this site some tend to get this, others can become constipated.
Another thing from my own experience (I've had 3 different urso manufacturers since starting it over 5 years ago) is that the fillers in the tablets might be the cause of certain stomach upsets. I used to be on one by Wockhardt in the early days and I had no problem at all after the initial few months of taking but then this pharmaceutical got its licence taken away for this product so had to be given another. I got a brand (Destolit) first and then was given generics the 2nd time (originally branded Ursogal - I am in the UK). I couldn't get along with the generic at all. Encountered constant heartburn whilst taking that and after 3 months I had enough so had to ask the GP to write the prescription out for the Destolit as so far never really encountered any problems with this.
Hi, Peridot! My doctor did indeed titre the dose down so I can try slowly building tolerance. I am taking one-quarter dose for a week then increasing one-quarter each week until I've progressed to a full 1000mg in 4-weeks time.
I asked about generic versus brand, as so many here and elsewhere reported differences. He replied that he had read some reports that the brands/patented drugs had fewer side-effects but saw no data-based evidence of that. I'm to try titering up and if still having problems ask the specialist about a prescription for brand name (Actigall seems to be most commonly used here in the States.)
I also asked about dietary changes but he seemed to be unaware of anything specific. He suggested avoiding red meats, high fats, cured meats or cheeses and anything I "know upsets my stomach." At one point in his advising I struggled to not literally roll my eyes back in my head! Not helpful.
Since he has little current experience with PBC (and had no specific knowledge whatsoever) I am scheduled to see a real PBC specialist in a couple of weeks. Will most definitely ask her about using a brand name Urso instead of the generic, and about dietary changes since many here recommend avoiding specific foods/food groups.
Thanks again for your help, Peridot. I've read many of your informative posts here and appreciate the detailed information you provide. Hope you are well. Best regards,
I did a bit of my own research several years ago on generics and branded drugs after being put on the urso. Prior to 2010 I had not had a doctor's prescription since 1999 and this is the first time I've been on something long-term.
Branded drugs are more costly to the NHS in the UK and it is due to licensing and patenting that they become generically produced at a later date normally as I understood it. Seems the norm that when a branded drug becomes available as a generic patients tend to be swapped in a lot of cases (I know a relative who had a med swap and was informed same thing but it is a different pharmaceutical and cheaper to the NHS but the same active ingredient as the branded.)
The active ingredient which in our case is the ursodeoxycholic acid is the same as in generic and branded but it tends to be the filling ingredients that can vary.
From my own experience I originally started off taking 600mgs daily of the urso as it goes off body weight and mgs and I was given one at the time known as Urdox. I took this for around 2 years and then the packaging changed and the name was dropped off the packaging but the tablets looked exactly the same with the name on them as always. The tablets were being produced by the same pharma as generics. I somehow knew of the change myself, had a few brief side-effects that didn't last like when I originally started but it got me wondering. I found out they were generics but they were the same ingredients as well as the fillers as always. I continued to take, had no problem but then the following year the pharma had its licence removed for these and other meds and I had to be given the urso in 150mgs that I now take 4 tablets as opposed to my original 2 x 300mgs daily. I originally received Destolit by a company called Norgine and was fine. when I took my next prescription the chemist refused me these as branded so I was given what I found were by the company who do the Ursogal but I received generics. I started having the heartburn straight off and it persisted the whole 90 days I had these for (I managed to get my GP to write me 90 days at a time as I have to pay for the urso) so much so I had to ask my GP to write me the script for Destolit so the pharmacy have to hand those over. Prior to this I had always had the prescription written generically and how you know is that it will state 'ursodeoxycholic acid' and the mgs and instructions for taking to the pharmacist. If generically written you can be handed these or a branded. I did check my generics and the fillers were slightly different to what I had been taking so perhaps it was that.
Hello Carol - sorry to hear you are having problems. I was diagnosed 3 years ago and started on 750 mg of Urso a day which I always take after food. The urso has brought my liver function tests right down to reasonable levels so I guess my liver likes it!
However, very soon I started to get abdominal pain and diarrhoea, some days worse than others. My GP thought it was to do with the PBC so I just carried on, thinking I had to live with it. I thought I should persevere with Urso because of my improving lfts.
However, at the start of this year, the pain and diarrhoea was worsening and in desperation I tried adjusting my diet. First I cut out fruit but that did nothing. Then I cut out wheat/gluten and practically overnight the pain and diarrhoea stopped and I felt great. I have had tests and am currently waiting to hear if I have Coeliac Disease (another autoimmune condition) or whether I am gluten intolerant.
This is my story and it may not apply to you, but I thought I would share it because it opens up other possibilities for symptoms experienced.
Hello, Diane! Thanks for taking time to share your dietary information. I recently asked my doctor about dietary information and he was utterly unhelpful. I would be surprised if it were something I'm eating with the Urso because this gastritis is very, very different than what I usually experience with reflux or my other digestive difficulties. I do intend to ask the specialist I'm seeing in a few weeks about diet, the brand of Urso, and other things I might do to better tolerate the medicine. I know I need to take it if I want to get on with my life.
Thanks again for taking the time to reply. I truly appreciate it. Hope you are well. Best regards.
I definitely had intense itching, prickling under my skin when I first started on Urso'. It mentioned in the information leaflet that came with the melds that this might be temporary so I wasn't too worried. However, it was really very unpleasant to say the least but it did go away after a month or so (forgotten how long now). It was worse at night and I found keeping as cool as possible helped a little. Hang on in there, and my thoughts are with you Cxx
i have been having severe itching. I can't stand it. I was recently put on Ocaliva and the Doctor is also keeping me on the URSO three times a day. I was diagnosed about twenty years ago. Since I started the Ocaliva, my itching has increased ten-fold. It's awful. He just told me to go off the Ocaliva for a week to see if it subsides. It has been 4 days and the itch hasn't really subsided. Any suggestions from anyone on what to do to feel more comfortable with this itching? Recently my pharmacy changed brands of URSO. I wonder if the formula is different. It seems whenever I take it, the itching starts shortly after and it's really bad at night.
Thanks to everyone for taking the time to reply to my post. I truly appreciate your willingness to share your experiences with PBC.
I see my doctor tomorrow and plan to ask him several questions about the Ursodiol, particularly on dosing strategies and the difference between generic and brand.
Will post an update if he provides any information that might be useful to others.
Make sure you take it with food. Better at dinner time than with just a small snack. Drink a full glass of water with it. Hang in there. It eventually settles down once your body gets used to it.
When I first started on Urso, I built up slowly, one then two then three, as can be prone to side effects. This has helped. The one main side effect with it is indigestion, peppermint oil often helps me with that. I have also been taking them one at a time through the day with meals, though eventually I'll probably move to taking them all in one go. You could ask your doctor if you can spread them out, or start slowly, see if it helps while your body adjusts?
I do empathise with the stomach problems, but mine are alongisde the Urso! My LFT results have gone down whilst on them, so hopefully they will be good for you on that front. Take care x
Hello, Shine1 and thank you for taking time to reply to my post. I have been prone to reflux and digestive issues for many years, but nothing quite like the reaction to the Urso. The doctor is now gradually increasing the dose and that seems to have reduced the stomach and bowel reaction.
As noted below, I've had a terrible bout of stomach issues again this weekend and will be asking the specialist I see in a couple of weeks to assess if this is the reaction to Urso or something else.
In the meantime, I'm just hoping to get up to a full dose of Urso so they can judge if it is working/likely to work. Patience is a virtue, but it really isn't one of mine...so I'm just trying to bear it.
I'm going to give the peppermint oil a try. Could you advise on the best place to find, also a good brand, and how much you're using? Thank again for the advice. Truly appreciated.
No problem. Hope the stomach reaction's settled a little for you? It's good the doctors happy with you starting on the low dose then building up, it helped me. I haven't been on the full dose of Urso for that long, I haven't actually felt any difference to my symptoms really, but my LFT results have already gone down, so that's good, hopefully you will find the same.
I have just posted too, as am getting liver area deep ache and it affects my stomach. Totally empathise with the stomach issues. Mine appeared as stomach symptoms first before the liver, though don't know which was first really, There are probably nicer organic brands, but I have been taking Holland and Barretts own version of peppermint oil for many years and had no problems with it. The stronger capsules are the 200mg ones, I take two of them when needed, which ends up most evenings! (Are you in the UK to get them?) It would be worth checking with your GP/ pharmacist first as I'm not an expert and don't want you to have any issues with them. I prefer the idea of taking them to antacids etc, and the majority of the time it helps ease the indigestion.
When I first started taking Urso this past March, the first 4 or 5 days, I had a raging headache (resolved by taking Tylenol or Motrin) flushing and sweating, and itching around my ankles, most often at night. I was NOT happy, especially about the sweating. I HATE to sweat! I was thinking that this was not living and might not be worth it. The headaches and sweating stopped within 5 days, thank goodness. The itching kept on for another week or two but has subsided. I still have it on occasion. However, for the most part, my body seems to have adjusted to it. I do take it twice a day. The first dosage, I take after my breakfast and I try to remember to drink a full glass of water afterwards. I think the water is important. The second dose I take at night, again with a full glass of water, which, of course, means I'm getting up at night but if it works, I'll deal with it. Try to give yourself a couple of weeks and see if it bothers you less.
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It's good to know I'm not alone and that others had the same horrible reaction to starting Urso (misery loves company?) I'd begun to worry it was something going wrong other than just the Urso. 
My LFT results have gone down whilst on them, so hopefully they will be good for you on that front. Take care x
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