I’ve just started taking Urso : Hi there, I... - PBC Foundation

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I’ve just started taking Urso

Darcy2608 profile image
Darcy2608

Hi there,

I’ve very recently just been diagnosed with PBC, and I finally got my prescription for Urso. So I’ve been on it for 2 days now and to be honest I feel really quite rough today. My tummy is really sore and I’ve felt like I have a real bad dose of hay fever and just feel groggy. Is this quite normal and will it disappear after a few days.

I didn’t know how long I should wait to talk to my doctor?

31 Replies

May be you can send your doctor a note about your concerns and either he or a nurse will get back to you. If you don’t feel well, don’t wait too long. That’s why you have a doctor, just ask them. It is their job to answer your questions/concerns.

Thank you and yes I will, I feel awful again today xx

Hi Darcy2608 I can see that you are in the UK. As ninjagirlwebb suggests it may be a good idea to have a telephone consultation with the GP or give the pharmacy a call they may be able to give you some guidance sooner. I know some people take a short while to settle into the URSO and sometimes you need to tweek the tablet taking regimen to suit your system. Some people take it spread across the day, some take it with or without food and some take it just before bed so that they sleep through some of the discomfort that they experience.

If your GP surgery are difficult to get an appointment with you could telephone through to the secretary of your specialist to get a message to him/her for guidance and of course there is the NHS 111 service.

The PBC Foundation also have a 24 hours help line service, if you call or drop them a line someone will get back to you.

Hope you feel better soon.

Let us know how you get on

Yes I have just sent an econsult form to the GP as I feel awful again today, thank you xxx

I felt like I had the flu the first few days on urso. My doc had me start with a partial dose and work up to the full dose over the course of a few weeks. By the time I reached the full dose I felt better than before starting urso. The first few days were definitely the worst for me. Maybe ask your doc about starting with a partial dose and working up to full over time. It might lessen symptoms and allow your body to adapt.

Yes that’s what I was wondering as I’ve started on 4 250mg a day 2 in the morning after breakfast and then after dinner, and I think it’s a shock to the system .. I’ve sent a message to my gp this morning xx

Barns21 profile image
Barns21 in reply to Darcy2608

My gastroenterologist did that too. I had a half dose for 8 days and then the full dose, he advised to take the whole dose before bed. Didn’t really feel unwell but did have a bit of an unsettled tummy. I have been taking the full dose for a week now and can’t say I have any ill effects. Hope you feel better soon x

Darcy2608 profile image
Darcy2608 in reply to Barns21

I’m glad you are doing well now, I’ve been feeling lots better today, but my skin has started itch like crazy now 😱 what a week! Hopefully it will die down soon x

Esnofla profile image
Esnofla in reply to Darcy2608

2000 mg a day sounds very high since it goes by weight. Unless you are over 300 pounds, I would question the dosage

Hi.. I remember when I first started taking urso tablets I felt very unwell similar to morning sickness it took 3mths for my body to climaties to the tablets but please carry on your body will to get use to the tablets Urso has helped my PBC 17 yrs. Hope you feel better soon x

Sydgal profile image
Sydgal in reply to janetfolley

Wow 17 years! And your still doing well that is great.Do you know what stage PBC you were at the time of diagnosis?

Thanks

janetfolley profile image
janetfolley in reply to Sydgal

Not sure what stage but my liver was except consultant at the time told me my liver was scarred. I try to keep to a low fat diet (not so good in pandemic) and exercise every day with my dog. My cholesterol was very high 11.8 but on statin meds bringing down to 5.2 which doc says ok. So I'm very lucky having PBC but can't remember last time I saw my consultant about 10yrs ago probably because I seemed to get bypassed by GP. Hope all ok with you...I'm 72

Wow that’s amazing, oh gosh 3 months.. I’m finding it hard to concentrate at the moment though and my job is really demanding, I’ve sent a message to my gp so I will see what they say. I’m more than happy to continue though

Darcy,I'm so sorry you're reacting the Urdodial but the medication can take some time for your body to adjust. I take a probiotic after my morning meal which helps calm my tummy but please contact your physician first. Unfortunately, I have PBC and Crohn's but now I'm trying a gluten free style regime and so far feeling better. It's been a slow process to change but realized I have many stables in my pantry that are gluten free.

Please let us know how you are doing.

Darcy2608 profile image
Darcy2608 in reply to Terri-Lynn

Ahh thank you. Well this morning i contacted the doctor as ive felt so dreadful all day as he's advised me to lower the dose to 1 capsule a day for a little while and then increase it gradually. Hopefully that will do the trick. Tbank you and good luck with the gluten free foods xx

Terri-Lynn profile image
Terri-Lynn in reply to Darcy2608

So glad you spoke with your doctor and he agreed you can reduce the medication for now until your body adjusts. Based on all the research I've done, the Urdodial will hopefully prevent further progression of liver damage. So it is important to increase it when you feel you can. This can be a difficult disease to manage but just know you are not alone. This forum has helped me to understand and validate the information I've received from my team of physicians and research. Get some rest.

Darcy2608 profile image
Darcy2608 in reply to Terri-Lynn

Thank you so much, I feel a lot better today thank you. I will take one after my dinner this evening x

Terri-Lynn profile image
Terri-Lynn in reply to Darcy2608

Darcy - That wonderful news and glad you are feeling better. You may want to incorporate drinking some green tea or any herbal tea that may have some cinnamon and/or ginger. I've been using Good Earth's Sweet & Spicy drinking it hot and cold. It's very soothing and has a great taste.

Darcy2608 profile image
Darcy2608 in reply to Terri-Lynn

That sounds nice, I will look into that. Feeling much better now, but my skin has starting itching like crazy, and I never had that before. I’m hoping that will also disappear now I’m down to one capsule a day x

Terri-Lynn profile image
Terri-Lynn in reply to Darcy2608

That happened to me too when I began the medication so I use a Neutrogena's Sesame oil when I get out of the shower on my damp skin. I get it at Costco but know Walmart carries it too. In the colder weather, I use a thicker lotion recommended for those with eczema. It reduces the itchiness for me. Hope this info helps and very glad you feeling better!

Darcy2608 profile image
Darcy2608 in reply to Terri-Lynn

We dont have Walmart here but we do have neutrogena. I shall check it out x

Terri-Lynn profile image
Terri-Lynn in reply to Darcy2608

I used Amazon to buy since here in Los Angeles we were under lockdown and I wasn't taking any additional risks. But now I'm vaccinated so feel more confident to shop in person.

Darcy2608 profile image
Darcy2608 in reply to Terri-Lynn

Yes we are still in a lockdown here, Amazon has been my lifeline lol. I’ve had my first jab now though so I feel safer too. Just another few weeks to go and we can go out properly again fingers crossed

Terri-Lynn profile image
Terri-Lynn in reply to Darcy2608

Amazon and Costco have been my lifelines too. I've even taken advantage of senior hours at Whole Foods, Trader Joe's and Costco for shopping. But have had to meet with clients at their offices so double masks have been my go to when in person. Here in LA out numbers are beginning to go up again probably from Spring Break activities and maybe reopening too quickly. Many people have CoV overload. Can't blame them but I'm trying to stay vigilant.

How are you feeling today?

Darcy2608 profile image
Darcy2608 in reply to Terri-Lynn

I’m feeling pretty good today thank you, 😀apart from my itchy skin, but my husband had some cream for eczema which I used and it helped. Thick cream like Vaseline, a bit stinky but it helped. Problem is all my clothes stick to it haha. I emailed my doctor too but I won’t get a reply till Monday . Yes I think I’m going a little crazy too, I really long for a day out, or to go out to a restaurant. I’m working still but from home mostly, I have to go in for 2 mornings a week, but I feel like all the fun has been sucked out of our lives ,.. not long to go though, our figures are still low, but Europe is terrible, I think we are safe for now, but who knows for the future xx

Terri-Lynn profile image
Terri-Lynn in reply to Darcy2608

I used Vaseline too at the beginning. I'm hopeful it will ease as your body becomes used to it. Try some Benadryl or any type of antihistamine. I used it to sleep at the beginning. I'm so sorry you're having an itchy (lol) time completely understand (been there, done that). Enjoy your weekend.

Thanks so much for replying everyone. I have contacted the doctor as ive felt so dreadful all day as he's advised me to lower the dose to 1 capsule a day for a little while and then increase it gradually. I do hope that helps and im sure it will xx

Hi Darcy , I started Urso last November and felt awful ... so my consultant told me to come off it for a while and then restart with one tab a day ... well I’m waiting till my second covid jab to restart , but my alp has come into the normal range without it !!!

We are all on a different journey ..

Keep well xx

Wow that’s great, I’m starting to feel a lot better, but my skin has become really itchy suddenly, and I didn’t have that before. I’m hoping it will die down soon as I’m in one capsule a day now

Let me know how you get on as I'm going to take one a day next month ..xx

Oh yes i will x

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