Experiences with

Urso

I have been on Urso since my diagnosis. I take 600 mg daily. I had lab a week ago & don't have the results but I decided to quit the Urso. My liver enzymes has never gotten anywhere near normal. They have come down. I'm just stopping the Urso for a few months & then have lab drawn.

I went a year without taking Urso, due to no medical coverage. I lost 30lbs but have been back on Urso now a year and gained some back. I am understanding from the comments Urso and Ocaliva has side effects of weight gain, correct? Also, the fatigue is bad in morning and evenings.

Did any of you gain weight after starting on Urso? I feel like since I started Urso, my weight has been creeping up and I feel "puffy" and my clothes seem to be snugger then usual.

Does anyone get bloating either with their pbc or urso?

Also my weight is 50 kilos taking 250mg of Urso 3 times a day equivalent to 750 mg. for so many years, my specialist reduced my Urso to 500mg a day, told me my liver is ok. Is 500 enough for my weight? Thanks for any opinion, suggestion. Take care, be well. From, Barotac Nuevo

[i]For the most part physicians have given up to a year to decide if you are a responder or not -- has the Urso decreased your numbers significantly in that time period.[/i] [i]According to Dr.

I have PBC and respond well to Urso. I am taking a holiday and need travel insurance. Any recommendations will be much appreciated

I posted the following yesterday (since deleted the post as reposting now): I started on Urso 2 months ago for suspected PBC.

Hi all, does the PBC itch come from the PBC or the urso? Does the itch come and go? Are there things that can trigger the itch? Thanks in advance for your feedback. 🩷

i’ve been on Urso for about two years now with good results and bringing my numbers back to the normal range. In the last year, I’ve been dealing with significant anxiety and I’ve not had this before.

Jones' book sometimes people will stop taking their Urso because their liver function tests have returned to normal. If your liver enzymes have returned to the normal range it just means that the Urso is working. The PBC isn't cured - it is just controlled.

If you are fortunate enough to be an URSO RESPONDER, and all liver enzyme tests have returned to normal, does that mean URSO is working to HALT the progression of PBC or has it just slowed down the progression?

I have had PBC for 20+ years and I have been taking URSO the whole time. I have no side effects from the medication. I have never met anyone else in person with PBC. It’s nice to be able to communicate with others and share.

Over 2 years on Urso and my ALP is in the normal range. Ultrasounds show an unremarkable liver. Yet I experience periodic feelings of despair and panic at having this disease … and I think I’m one of the more fortunate individuals, so then I feel guilty for how I feel.

i.e. " Am I a responder to Urso?" "Am I a non responder?" Don't just reply 'yes' when he asks if you are taking your Urso. He said that if you ask very specific questions, then the doctor can't just glaze over an answer as they often do. He has to answer your very direct question.

Today I want to go to something very basic - your Urso dosage. 1. is the proven first line treatment for PBC and should be started as soon as PBC is suspected 2. The dose is [u]always[/u] based solely on your body weight - NEVER symptoms or lab results. 3.

I have been on Urso for nine months, but only on the optimal dose for four months. My GGT lowered from 569 to 225 as well.

I live in Glasgow and I am having difficulty getting my prescription filled for Cholurso 250mg all local pharmacy’s saying supply issue anyone else experiencing this ?

For someone who may have started with results in 5-6-700 or more, then after taking Urso for awhile, they may have numbers in the 300's. What an improvement for them! It's not really beneficial to compare numbers. I had a friend the other day who, after taking Urso, her alk phos was 160.

I was diagnosed with PBC 12 years ago & I have responded well to Urso. I now have hypothyroidism & NAFLD. My question to the group is whether others suffer from extremely dry skin & what product would you recommend or you have found to be effective on extremely dry skin.