Has anyone stopped taking Ursodiol for a short time?

[Arlie]

Has anyone stop taking your Urisidol for two weeks if so what happened or what was the longest you were not able to take your -

Ursodeoxycholic acid (UDCA) - ursodiol for liver

[P13jne]

Hi Arlie. I was taken off urso for 2 weeks and advised to monitor any effects. My consultant was supposed to phone me after 3 weeks for a catch up, but you know what consultants are like, she didn’t bother phoning so I’ll have to wait for my next appointment possibly next month, to update her.

I have awful nausea, after taking urso. The itching only started when it was prescribed. I have tummy upsets and issues with going to the toilet.

When I stopped for 2 weeks I felt worse for 8 days, ended up in bed for 3 days with abdominal pains. I have a rubbish appetite anyway, but this made me eat even less. After day 8 I began to feel a lot better. My muscle aches and pains began to lessen.

Then the 2 weeks were up, I started urso again and all the symptoms returned.

I don’t know if this will help you. Have you been advised to take a break from urso too?

Hope you’re feeling well. Jane xx

[Arlie in reply to P13jne]

This post was for my Mom - Who recently passed away not from PBC. What started out as a simple blood infection spiraled into tragedy from their neglect. She was misdiagnosed and put on an NG tube and unfortunately that Medicine does not come an IV format. I’m just trying to figure out what effect that would’ve had if she didn’t take her medicine. Thank you for answering me I appreciate it.

[Arlie in reply to Arlie]

I wish you nothing but the best I hope they can figure out your medicine

[P13jne in reply to Arlie]

Arlie I hope you find the answers you need. I wondered if it was about your mum as I knew what had happened and the dilemma you’re in. Sending lots of love to you and prayers for you to help guide you. Always here if you want to chat. Jane xx

[Arlie in reply to P13jne]

Thank you so much Jane xoxox this is the hardest thing ever - I just want to be as educated as I can be when I get into this hospital with my questions. How was your iver numbers while off of it? Did your Bilirubin go higher? Her's did, climbed to 13 but I was told her liver enzymes were good her liver was working -

[P13jne in reply to Arlie]

I’ve not had any results, but before and after it I do know my haemoglobin dropped. This is something else I need to discuss with the consultant as my gp doesn’t want to do anything that will cause anymore issues with my liver.

I’m sure it’ll all be sorted once I see the consultant. Whenever that may be.

Look after yourself, all the worry and searching can cause you a huge amount of pain so you can’t let yourself become poorly over it my lovely. Jane xx

[Arlie in reply to P13jne]

Thanks Jane I wish you all the best - this disease seems so frustrating seems you get the diagnosis - take a pill and then your stagment and a sitting duck, with numbers up and down causing worry. My Mom was stable after 30 years with this disease holding her own breaks my heart that after everything she had been through the hospital didnt hold her in the utmost care. I hope you will get the answers you deserve and need what state are you in? Dr. Fortune in NYC was a great Doctor we saw out of NY Presbyterian

[P13jne in reply to Arlie]

Hi Arlie, I’m in Aberdeenshire in Scotland. I’m only diagnosed since February so I’m like Alice in Wonderland at the moment. Still looking for the white rabbit to give me some answers. Xx

[2bear in reply to Arlie]

Hi Arlie. Are u in New York ? Wanted to know about this doctor. Did this doctor want a biopsy ? Interested in how u saw he or she was great . Is this doctor also part of a group practice at the hospital . Thanks.

[Arlie in reply to 2bear]

Sorry for the late response 2bear. His name is Dr. Brett Fortune he is out of Presby - he is with a group out of that hospital which is a top one. Good luck xoxo

[phone]

[2bear in reply to Arlie]

Hi thanks so much. Is there a way to call u. U are in NY?

[Odieweb]

Hi Arlie I'm so sorry about your loss, and send you big hugs. I don't have enough experience of Urso to give any advice, but my thoughts are with you at this time of loss, and I hope you get answers that help you through this time.

[Skypony]

Hi Arlie, my heart goes out to you in this situation. Being bereaved myself, I'm finding bereavement counselling helpful and although this probably isn't right for you at the moment, at some point maybe it can help you. I hope so.

On the question of not taking Urso for a couple of weeks, I'm not medically trained but I'd guess that this might not make much difference to someone's overall health. I hope you find a doctor who can reassure you at least on that point. As for the rest, I hope you find some peace soon. Best wishes x

[Arlie]

Thank you so much I just had a feeling it wasn’t that she was malnutritioned with an

album in level of 0.3 and leaking vessels... The Doctor told me she was coming home on a Tuesday that Friday or Saturday she was going to sub acute rehab in the background things are not good for my mother and they did not do the right thing for her. No critical care they let her suffer worst than an animal =(

[gwillistexas]

Hello & hugs to you. I have no experience with URSO. I apologize I didn’t get around to calling you as you asked. I wanted to share this with you.

Arlie and I messaged quite a bit. She told me about her sister in Mineola. Arlie planned a visit to her sister, I think it was last April maybe. I’m not but about 40 minutes from Mineola. We were going to meet and have lunch then she began having some problems. But she still had hopes of being able to make the trip. I’m so saddened that I didn’t have the privilege of meeting her. She was a sweety 😥❣️

[Ray-in-UK]

Hi Arlie. I'm sorry for your loss.

My experience won't help you but might be useful for others.

My partner is on Urso - she had a 2 week break as her local pharmacy wasn't doing a good job and left her without any and didn't pre warn her they couldn't get any.

When she re-started on Urso, there was no advice about phasing in slowly and she got confused, dizzy, sick and then passed out. Paramedics werent getting any pain response and she was mostly unconscious for over 30 minutes and ended up in hospital for a day.

This may have been an interaction with her anticonvulsants but it was scary and totally avoidable.

We changed pharmacy and the new one is a lot more competent! They also had a shortage but phoned her immediately including giving advice of another pharmacy that had stock.