Hello,
My wife has early stage PBC and was subscribed URSO, but gets paralysing stomach cramps when she takes a single tablet. So now she's stopped taking them. What's left for her now?
I'm so wirrued for her, I can't sleep at night. If she needs a liver transplant, I'm only to happy to give her half of mine, if I'm rhe same blood group, of course. She's 63 and I'm 61. What should we do now?
Ocaliva (obethalic Acid) that is the other medicine that has been approved by FDA for PBC.
Ask the doctor to prescribe that.
Nicholas, please don’t worry so much. I have no personal experience of Urso causing problems, but your wife is not alone, and there are now alternatives. A couple of things you said give reason for optimism. Firstly, she is at an early stage and secondly she is 63. PBC is slow to progress, and there is a saying that you will come across often if you read these posts “most people die WITH it, not OF it”. No need to even think of transplants at this stage. Go back to your wife’s doctor/consultant and discuss other medications.
Best wishes to you both.
I’m so sorry but there is other medication for her. She is very lucky to have a carrying husband looking after her.
Has she tried splitting the tablets? Maybe she can take half doses until her body adjusts? I have heard of other people doing this with pretty good results.
Best wishes,
Pam
...also... Please make sure she is taking her URSO with a "full meal". Hopefully nothing acidic. Just a good balanced meal.
I had issues at first because I wasn't eating enough when I took my URSO. Then I started splitting the dose, 1/2 in the morning with a decent breakfast, and the other half at dinner. Also, drink plenty of water too.
Stella
Don't worry, I have PBC and cannot take the Urso either, it;s been 2 years now without it and I am still the same, no change in my tests at all, your wife will be fine, but do explore the Oclavia first, speak to your doctor, we are all different, Good Luck
Jaycee- I too cannot tolerate urso and am on nothing. My insurance refused me Ocaliva due to the cost ($7300) a month. I am still fighting them though. Are you on Ocaliva? Just curious..
I am on Ocalvia. My dr worked hard to get it. But I’m doing good so far. Hope you can get approved for it. Best wishes to you.
Hi donna01 No I am not on anything, I don't want Ocaliva, I saw my Gastro today and was discharged, only to get yearly blood tests and watch for jaundice as that is the first sign there is something going on, but he says I am at the lower end, I only have the tiredness, no itch or anything, I'm really very lucky. I have 3 autoimmunes, and only take meds for my thyroid, can't tolerate the meds for osteoporosis, so get a yearly infusion for that. and also HS. nothing for that either. Hope you keep well.
3 Autoimmunes? How awful... I thought 2 were bad.. I have Reynauds (however you spell it) and PBC. I would just like the opportunity to try the Ocaliva since I could never tolerate Urso. Would like to see if it takes my alk phos down at all. The itch thing just started with me (on and off). I was diagnosed in 2014 I believe. It's all a blur; as it all started after having gallstones and having gallbladder removed. 
Sorry for posting twice, thought first didn’t post😊
I have recently been diagnosed and it was only discovered due to myself having gallstones and a bad infection
Did you have your gallbladder removed? Odd thing with me, My blood work was ALL normal until 3 months after they took my gallbladder. Then it was all downhill from there. I am fully convinced the gallbladder removal did this to me or by chance they injured a bile duct? I don't know. Makes no sense that my blood was all normal until they took my gallbladder.
Yes I did . I had a bad infection called cholysystitus , I was jaundice too .
I was not jaundice. I had gallstones that acted up every so often and it was recommended I have gallbladder removed because I was told "Everyone has gallstones. Some people just can feel them move around more than others." I curse the day I had that done.
Yeah , after going to emergency twice in pain and got sent home with the nurse saying it was the IBS next thing I’m in an ambulance and got told I needed to have gallbladder removed . I’m often wonder if that was the start of the PBC
My friend has huge gallstones that bother her on & off. The doctor told her to have surgery but she refused.
I don't blame her. Tell her to ask for medicine to dissolve the gallstones. Doctors are too quick to operate in my opinion. I don't remember the med name but Google it!
I think urso helps with gallstones too!
I think hers are too big for meds only & her doctor says she is a ticking time bomb.
There is another lady on this site who had gallbladder removed and now has pbc wonder is there a correlation between removal of gallbladder and pbc
I am not sure, but surely suspect it. I do know there are people on here that still have their gallbladder.
I still have mine and have pbc but i have noticed other members having gallstones and gallbladder removed and getting pbc just wondered could there be a link in my case my lfts started to elevate when i was prescribed statins for cholesterol and i have wondered if there is a link also i suppose we just dont know what triggers pbc
I am not sure about that as I never have been on statins and am just now starting to have elevated cholesterol. My doc says PBC causes elevated cholesterol.
Thats interesting has your doctor prescribed meds for cholesterol
No. Because my good cholesterol is fine.
Jaycee...I am also low end fibrosis but my dr would never discharge me to only have yearly labs. Do you have PBC? Why would a dr risk waiting until your jaundiced??? I have no itch but was having fatigue. Now that my thyroid dosage was raised I’m not noticing fatigue.
Jaycee...I am also low end fibrosis but my dr would never discharge me to only have yearly labs. Do you have PBC? Why would a dr risk waiting until your jaundiced??? I have no itch but was having fatigue. Now that my thyroid dosage was raised I’m not noticing fatigue.
Jaycee...guess I’m not sure if you have PBC, but if you do, why would your dr discharge you & only do yearly labs? I’m mild fibrosis & have no itch. Was having slight fatigue until my thyroid doseage was increased but that solved it for the time being anyway. My GI is keeping close eye on ALP & bilirubin so hopefully should they get out of range, he can do something to keep jaundice away. My labs have been monthly & after the next one in January, if all is still improving I will have them at 3 month intervals. Good luck to you.
gwillistexas. That's what they have told me, 2 of them, gastroenterologists that is, I have a lot of fatigue, yes, I was diagnosed via a biopsy, so defo have it, where do you live, I am in Scotland, aybe it's different where you are, Stay well,
Jaycee...I am in Texas. Yes, I should know by now, different drs & countries are different. But that’s ok. As long as we get the treatment & attention we need. Good wishes to you as well❣️
Make sure you go back to the liver specialist with the above concerns & he/she will guide you to what the best course of action is for your wife.
As others said, pbc is a slowly progressive disease & was caught early. So the outlook is not grim. Just have to trust in your doctors to help your wife.
Good Luck.
Sorry to hear that i started urso one week ago 3 capsules ursofalk i take them with my breakfast as a single dose no side effects so far TG i wonder if your wife changed the brand would it help it might be worth looking into
I know there are different brands
definitely take Urso with or at the end of a meal. I have had PBC for 12 years now and feel fine. You will find "things" happen along the way maybe because of the PBC but my Consultant told me in the early days Mostly people die WITH not of.
It is scary when you are first diagnosed. Talk to the specialists.
hi do not wwworry i have pbc and at first refused urso on apurely don t kike taking tablets reason i am 62had pbc 8/9yr abd never started ursi for the first 4yrs and it never got really worse its very slow disease wgere my consultant told me i would die with it not of it basically something else would get me so go home and don t worty please discuss with your liver consiltant
All of the above advice is so good and on the ball. In addition, why not talk to the trained advisors at the 'PBC Foundation' ... they host this site on 'Health Unlocked' and the links at the top of this page will take you to their website, and the info for the phone and email contacts for their advisors. They are great, so well-informed, patient and friendly. Also join the 'PBC F' (it's free) as there is a mine of information on the site which will help you and your wife so much ... as well as knowing that support is only a phone call, google or email away. They have loads of up-to-date info on the site, with advice on Urso, diet, understanding results and symptoms, etc.
PBC is a funny disease, it is rare enough for many GPs to have never treated it, and it also seems so scary ... yet the vast majority of people on here just get on with their normal lives. But it is this initial phase where you need most help. One of the main helps that I found - apart from the 'PBC F' and its advisors - was to learn as much about the condition as possible. My GP said I knew far more about it than he did, although he was obviously better at explaining all the tests. I think we have to try to become our own best experts, so that we can help ourselves and our loved ones as much as possible - as well as occasionally putting the odd Medic right, eg: when you realise you know more than they do.
Come on here, any time, to ask things, or just to get support, but I really recommend talking to the PBC F, as well as learning all you can.
The other thing is to try not to stress. Anxiety is the worst for all auto-immune conditions, so try to encourage your wife to do things she loves, enjoy life and have fun. That might sound counter-intuitive given the worries and symptoms at the moment, but spoiling ourselves - and doing things we love - helps our minds and bodies to fight back.
Hope this helps, take care.
I second what Stella says! I had a HARD TIME adjusting to the Urso. I did two things, first I MADE SURE I had food in my tummy (at least 20 min AFTER A MEAL) to take it, The second thing I did was take 3 doses (I was on 300mg 4x a day) in the evening AFTER I was home from work...
I took Watson brand, I was told that it’s a harsh brand on your system...I’m a pharmacy Technician and know that different brands use different fillers but after I adjusted how I was taking it I was fine.
I cannot take Urso either, 4 years now. Alk Phos not even close to being high enough to qualify for Ocaliva, not that i would take it anyway. Diagnosed at age 55 with cirrhosis, on Urso one year with terrible side effects. Off 4 years and blood work is basically the same. I try to eat clean, but veer off course now and then. Trying to just enjoy life, my worst symptom is fatigue. I too am very lucky to have a very caring and loving husband. That helps so very much!
You did not mention the dosage, I have been switched to the tablet form and find it’s much easier on my system!
Thank you all so much! I just came back from my GI and my bloodwork was the same except AMAs were negative this time? Globulin, AST, and ALT are still elevated (though Globulin is slightly) At around 3.8, 45, 133 in that order. It's been that say for a while. She's looking for PBC (though she says it's not consistent with it), Small duct PSC, but she's looking for AIH MORE than not especially. She's trying to confirm diagnosis since she can't tell. (No antibodies, period. Unless it's from PANCA/ANCA antibodies since that I do have) At this point, I do have Chronic Liver disease and this'll be my second organ that's damaged from Autoimmune disease
Sorry to hear about the damage. Keep working with your doctor so that you can be treated once diagnosed. Stay well!
Thanks, I actually didn't realize that I posted in this thread by mistake. I made a thread and replied on my phone and it posted here. I'm incredibly sorry!
No need to be sorry. No big deal. I just hope you will get answers soon. Whatever it is, trust your medical team to help you manage through it.
Thank you!
Sorry not read all your responses. So if I'm repeating I apologise. Just two things. I always take after a meal on full tummy. & sometimes the coating can be the culprit rather than the urso . I.e. if it's a capsule rather than a ain uncounted tablet. Etc.x
I’ve just started taking Urso 
foods I can’t tolerate since taking Urso
Non-responder stopped taking UCDA/Urso
Does taking Urso cause some liver pain?
