Stopping Urso on trial

[P13jne]

Morning everyone, hope your day is kind to you all.

I’ve been on Urso since Feb when I was diagnosed with PBC. I’ve had issues and this is when the itching started and abdominal pain. After my visit last week to see GI consultant, she decided that I should have a 2 week break. If I improve, then Urso is a factor and she’ll look into changing this. If I get worse then it’s due to PBC and not Urso.

I’ve been gradually getting worse, Yesterday I had such an acidic stomach it felt like my heart was beginning to struggle, I had palpitations too. My muscle and joint pain are severely worse. My stools are now completely yellow and strong smelling, sorry, my fatigue has hit a new level of exhaustion too.

The consultant did say my liver function has improved slowly whilst being in Urso, my fibroscan 6 months ago was 8.2 and now is 5.4.

Has anyone else had to trial stop Urso, and what effects did it have on you?

Thanks for any help, Jane xx

[Hidden]

Hi Jane

I know your having a very tough time right now and I'll always be hear for you via our PM !

Sorry I cannot comment on your medication but hopefully someone from our lovely team can!

Love Trish 💕

[P13jne in reply to Hidden]

Hi Trish, I’ve just spoken with Colette from PBC foundation. She’s great x

[Hidden in reply to P13jne]

I'm useless as I've not called her yet! I keep feeling like I'm wasting others time if I do!

I do hope she's helped you ? X

[EileenUSA]

Hi

I'm sorry to hear you are having these issues. Would it be possible to try lower dose of URSO and slowly build up to see if body tolerates and or gets used to it? My system was pretty overwhelmed with it when I started and with my doctors advice I did slowly build up dosing. Perhaps you already tried this.. I hope you get relief and that your doctors get you on the best track! hugs to all!

[P13jne in reply to EileenUSA]

Hi Eileen, I’m a bit upside down at the moment. I thought once I’d stopped Urso, I’d feel a huge difference by feeling better. Unfortunately this isn’t the case. I almost started back on it today since Yesterday was such a struggle. I’ll persevere and wait until next Wednesday before taking a smaller dose to start with. On the plus side, my horrible itch has stopped!

I hope you’re well, take care, I’ll let you know of the outcome next week when I start it again. Jane xx

[Hidden]

Hi P13jne, I'm sorry to read how bad you have been feeling. But it is very good news that fibrosis is down. I haven't had a 'trial stop' of Urso, nor did I have any gastric problems with it. You have mentioned that your diet is "poor" (you said it, not me ). You mentioned 'mostly yogurt and scones'. Yogurt would certainly make very loose stools if it was a big proportion of your diet. Is that your normal diet or was Urso making spoiling your appetite? Is that a possible cause of your bowel problems? I hope you are able to drink enough fluids to compensate for the loss. I'm glad you spoke to Collette - she is magic.

[P13jne in reply to Hidden]

Hi 220681ok, how’re you doing? Hope you’re well.

My stools are probably due to bile yuk.... but on another plus, the diarrhoea then constipation is gone. I knew this was down to Urso. And yes my diet is still awful, but it has been all along. My husband tries to coax me with lots of different foods, not my idea of fun though. I do drink plenty water throughout the day. So am well hydrated. I’ll restart Urso again next Wednesday, I’m sure the horrible itch will return 😢. Take care, Jane xx

[Dinasmom in reply to P13jne]

Please try to eat healthier. I was diagnosed last February and have been reading up on this illness ever since. MANY people on the various boards I read say they feel MUCH better eating healthy. Ever since my diagnosis, I have been eating a Mediterranean style diet. It was HARD eliminating all sugars and processed foods...but SO worth it. I am totally symptom free on URSO and lost 45 pounds. Hang in there and explore eating a bit healthier. I really think you'll feel better.

[Karaxxx]

Hi I was started on urso in March & within 6 weeks was suffering with intolerable itching. I was told to stop then re start on a lower dose & build it up. That didn’t work, the itch returned before I was up to full dose. I then had to take Rifampicin for the itch which after a week stopped. When I saw my consultant he said the full dose was working but has reduced it slightly & will re check bloods 6 weeks after. I’m now down to 2 250mg tablets daily & the itch has gone. However he did say that if my bloods raise I will have to go back to 3 & maybe it will return & so I will be back on the others too. I hope they’re ok as just taking the 2 doesn’t make me itch. I have no other side effects from the Urso. X

[P13jne in reply to Karaxxx]

Hi Kara, as soon as I started Urso I inherited the horrible itch, I was put on anti histamine to help which has a sedative in. But since I’ve stopped Urso I no longer have the itch. I was on 750mg per day, which I’ll restart gradually again next week.

I’m glad you don’t have any other side effects as they can be relentless.

Take care, and I’ll update once I start back on Urso,

Jane xx

[Candy12]

I’ve never stopped it, well not intentionally. I went on holiday for a week some years ago and forgot to take them with me. The thought of a week without them made panic at the time, so I went of to Dr Google ( I know I should listen to my own advice). But I did learn that URSO has a long half life ( how long it’s in the system for) it’ said between 3.5 to 5.8 days so your symptoms may still be due to the URSO if your in that time frame. I’d wait the full two weeks suggested by your doctors before considering what way to go. Hope it settles down soon.

I went the week without them on the holiday but thankfully never had any throw back symptoms in that time.

[P13jne]

Thanks Dinasmom, I try to eat healthy but I have no appetite. It’s been a continual battle but I’ll get there😜 I’ve lost 1.5 stones from this all started, I’m not over weight now and will try better. Thanks for your concern I hope you’re well and if not then please continue to chat on here. That’s my saviour when I’m struggling xx Jane

[Hidden]

P13jne, all the people that I've seen on here who weren't allergic, but didn't tolerate Urso well, either ate too big a meal or not enough, or too fatty or sugary foods. Even if your problems don't relate to Urso, if you could explore the lack of apetite and fix it, it would be a help to you. You don't need to eat much. Variety is very important to get all the nutrients you need. Not naggin, just sayin...

[susanashworth]

Hi Jane

Sorry you are having a tough time! I stopped Urso for a year and was fine , I continue to have severe stomach pain on occasion and after having several tests we never did find the cause,I just started back on Urso this week to keepPBC under control , the only symptom I have had in the fatigue ,

Feel better soon!!

Sue,

[P13jne in reply to susanashworth]

Thank you Susanashworth, that’s positive. My fatigue is relentless just now. Hopefully I’ll turn a corner soon and see a huge change. Jane xx

[EileenUSA in reply to P13jne]

No magic words from me- just sending a hug. I know how frustrating and hard it is mentally as well as physically. This crazy disease is a rough one. Hang in there I hope the momentum flips your way.

[P13jne in reply to EileenUSA]

Thanks Eileen, your kind words mean so much. Yes this disease is an abyss.

Take care my lovely. Jane xx

[susanashworth in reply to P13jne]

Sending you love and light

[P13jne in reply to susanashworth]

Oops sorry, I hope you’re a responder with Urso and are well xx

[Vivaldii]

Just came off urso 4 days ago as I was sick as a dog on it.I lost my appetite and lost 10lbs ,stomach was a mess and nausea and fatigue were terrible.So far fatigue reduced by 60% and nausea is gone.But stomach still a mess with bad constipation which is affecting my appetite.Had some itch coming off it but not too bad On the whole I would say the urso was making me feel terrible.I plan to request an appointment to se an internist or gastrointestinal doc to try and get to the bottom of the stomach issues I had these issues before diagnosis last November.No doubt I will end up either back on urso or Oclavia .......and am dreading this as I am finding the treatment worse than the disease......I guess it will boil down to quality of life ....keep us posted with this journey off the urso and I will too Cheers x

[P13jne in reply to Vivaldii]

Thank you Vivaldii, it’s only now after 11 days that I am beginning to feel my stomach issues are getting better. As soon as I stopped the Urso the constipation/diarrhoea began to disappear. I’m now having pale yellow stools which are not causing any pain or discomfort. I knew this was the Urso from starting it very early on.

My only real moan now is the fatigue is worse from coming off it.

I will keep you posted, take care and let me know how you get on.

Jane xx

[Vivaldii in reply to P13jne]

Stomach still bad here although fatigue 110% better ....going to go gluten free for a week or two and see if it helps I have been tested for celiac and am negative but could still be intolerant.Its not been a week yet off urso So I’m hopeful ....please keep me posted

[P13jne in reply to Vivaldii]

I’ll let you know, good luck and hope the gluten free helps. Jane xx

[Evaibrahim60]

Yes I did that but I was taking it for 17 years only the last 2 years of them I got the horrible rashes. I asked my doctors who said highly unlikely but then I got sick of it all having to have up to 3showers a day and tried all the cream that could help. I have in my own started to stop my medication one by one and left the Urso till the end because of believing it’s good for my liver. Once I stopped it the rashes were eased down by 4month I didn’t have any more rashes. This was back in January 2018. However having said that if it did work for you you shouldn’t stop taking it without doctors advice.

[P13jne in reply to Evaibrahim60]

Thank you Evaibrahim60 it’s a horrible disease, but when the medication is causing more issues it’s a lot to deal with. Hope you’re doing ok now.

I won’t stop Urso completely as I’m back on Wednesday. This is all my consultants advice.

Take care

Jane xx

[My-life]

Just wanted to say. Here for you.

[P13jne in reply to My-life]

My-life thank you. It’s so inspiring knowing the concern from everyone on here is so genuine. Hope you’re well too. Jane xx