Cholurso and weight gain: I am taking 1000mg... - PBC Foundation

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Cholurso and weight gain

Lbh57 profile image
4 Replies

I am taking 1000mg of Cholurso daily and gaining weight despite reducing calorie intake and increasing exercise. Is this a side effect of Cholurso?

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Lbh57 profile image
Lbh57
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4 Replies
kimphoebe profile image
kimphoebe

Hi there

Sorry not heard of that medication for pbc

Do you mean Urso 🤔

butterflyEi profile image
butterflyEi

How long is it since you started taking URSO? Many report an increase in weight but it is supposed to settle down after a few months. Does the patient information leaflet (PIL) give you any information about weight gain? Usually most PILs cover side effects etc.

When I was first diagnosed and for quite a while I put on quite a lot of weight but that was down to life style, unlike yourself with good exercise my work was quite long hours and sedantry and at the end of a long day I was not inclined to take a walk let alone a work out. After retirement I was able to slowly bring my weight down to its current level, I struggle to lose more although I would like to.

With PBC the thyroid can often become a problem, if that goes out of kilter then weight gain or loss can be experienced.

Also on the right hand side of this page you will find suggestions for other postings on weight which may give you some insight.

best wishes

Katienharley profile image
Katienharley

I had started gaining weight about a year before I was diagnosed with PBC - my liver enzymes were quite high. I too had a very active lifestyle and ate very healthy so I was completely lost as to what was going on. I had never been worried about weight. I was started on 750mg of Urso and at first my enzymes started declining and the weight melted off to what I normally was. Then I stopped responding to Urso, liver enzymes were creeping back up and so was my weight. My hepatologist increased my Urso to 1000mg and again my weight went down. My last appointment 2 weeks ago showed my enzymes back up again - which I assumed they would be as my weight is creeping back up again. It’s so frustrating.

I’m now waiting for all the paperwork to go through for Ocaliva and I truly believe that once my enzymes start declining again my weight will as well.

I think it’s connected to high enzymes in my case. I read about Urso and weight gain and from what I understand about a 5 pound weight gain in the first year is normal. I’ve been on Urso for 1.5yrs - my normal weight before al this was 118lbs, at diagnosis I was 140lbs. Then back down to 118lbs and now I’ve crept back up to 126lbs. It’s been a bit of a roller coaster in terms of medication, enzyme levels and weight. I’m hoping Ocaliva will put some stability in my life - just waiting to hear back from the benefits company on coverage.

Ash322 profile image
Ash322

Like you I have put on heaps of weight. I have taken Ursosan for several years and recently put on a lot of weight. Also massive itching but after a month of anti itch meds, that has settled. Dieting doesn't help. I have taken myself off Ursosan once before and then they were not happy with my blood tests. Was told to go back on. Really frustrating. I have COPD as well and the extra weight makes it near impossible to walk any distance. Also just had a knee replaced. Feeling miserable. :(

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