PBC Foundation
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Gaining weight

It might just be a coincidence but since starting Ursofalk two years ago I've slowly put on weight. A pound here and a pound there until its two stone and climbing. My diets the same, my exercise is the same albeit it's next to nothing but I've never been one for all that running around. Does anyone else have this problem. Please don't tell me it's my age (45) lol

16 Replies

Yes I have. I have had pbc for 16 years and its only the last four that I started putting on the pounds (and stones). Eat less than I used to and because I feel quite well just now have exercised more. My consultant says its a combination of age (I am 60) and the urso and not to get too hung up on dieting. Funnily enough I have been quite well recently. Problem for me though is ppl just see a fat person. Lol


I eat a lot. I blamed the steroids initially as I was on them for 18 months but the consultant says its just that we need more energy to function so are hungry/cold more and hence eat more. I have stayed the same weight. I am 46, 5 foot 4 and stay about 53kilos. Which is towards the top end of the healthy weight scale for me. What I do find, when I put on a couple of pound following say holidays, is that it takes longer to lose them now. Would have to really try for a few weeks. I am also on Urso and Imuran.


Yes Junolee, steroids can make you gain weight. I was widowed in my first marriage and my late husband was on steroids on/off for a few years. Although he was unfortunate that they caused him further problems (at some point he developed Addisons Disease where the adrenal glands shut down completely but that is a different isssue), I know that when he was on another course of steroids, he had the appetite of an horse, I used to say he was like the Bionic Man as they tend to speed your system up.

I know if you are on steroids long-term you can develop what is known as a moon face due to them.

Although when I started on urso the GP rounded my weight off to 60kg I know for a fact that I am nowhere near that. I don't bother as the consultant set the urso at 10mgs per kg body weight and finding out that this seems to be a bit under for calculation (it is often recommended between 13mgs and 15mgs per kg body weight according to information read and it was featured in Bear Facts notso long ago), for me it works out that bit better and currently I am still responding to urso 4yrs on.

I'd say that for your height Junolee and your weight you stated here you sound OK to me. I am 5ft 3 inches, my BMI according to the chart (that I don't actually wholly agree with) is within normal range but I am just under 50 kgs. I am 51 almost.


I have also put on weight around 3 stone. I am 53. I get bad fatigue so I don't exercise but my job I do I am running around for 8 hours which takes it out of me. I was diagnosed 3 years ago.


I've lost 3 St 8 lbs since diagnosis. Because I can't digest fat very well & process alcohol so low fat healthy eating & no booze had worked for me. X we're all different. I suppose. X


Have also slowly put on weight over past 3 years since taking URSO. Eat sensibly with a few sins but now 70kg at 5 ft 5 (overweight by BMI )and 54 years old. Try to walk as much as possible and will lose a bit over summer. Worried about fatty liver disease as a consequence.


Yes I too put on weight really easily since starting Urso 2 Years ago, I am constantly watching what I eat. Consultant says it isn't to do with the medication, but I can't see any other possible cause for it.


Hello stevie1.

Well it is said that with urso, some can gain weight but also others can lose weight. My theory is that when we take urso with improved blood results meaning our liver isn't taking as much strain, with improved digestion, perhaps that is why there is weight gain.....that is if you've not been struck by the itch (I did, had it almost 5yrs now, diagnosed with PBC Dec 2010 at aged 46).

I say this because although over the years I've been a pretty steady weight, in the year I was diagnosed due to a hefty work load, fatigue and itching I did actually lose some weight. (Probably around 10 pounds, nothing extreme.)

I started on urso Dec 2010 and the itch has improved over time but I still itch at night and due to this, I tend to find during the evening, feeling prickly I fidget about pretty much constantly. If I can't sleep during the night due to the itch I am obviously still on the move and burning energy. I think this is how I maintain a steadfast weight (I am usually around 8 stone 12 pounds these days. With clothing on when I was diagnosed and given urso I was said to be 9 stone 3 pounds).

I have my own cut off for eating and that is the evening meal. Once I've eaten, then apart from a couple of drinks of tea (I tend to switch to the red tea with a splash of milk in the evening as it is caffeine-free and also supposed to hydrate unlike black tea), the odd couple of Rich Tea biscuits sometimes I don't eat again until breakfast the following morning. My way of thinking here too is that digestion can take place without interruption and it is better for the itch as I came to know a long time ago that as daft as it seems if we didn't eat or drink we'd not itch. So for me I tend to have the itch vanish around 5a.m.

I have never gone to a gym but I have worked in manual (domestic) positions and I am active nearly all the waking hours. I always make sure I have a walk in every day, I use stairs as opposed to lifts when I am out and about (bit difficult in one major supermarket we have in town I find, 'lift city'!) and I do carry groceries from town so I don't think I need any weights there.

I started going through the menopause 2 years ago now and I think I have just completed (well hoping so now that I've just gone through 2 months without a cycle). I am almost 51 so not sure if my body shape will change naturally now I have or am almost there.

I have to say I do not see ursodeoxycholic acid as a medication, never have. I see it as a supplement as basically we are adding an addition component in bile that we have to our system due to compromisation of our biliary system with having PBC.

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Hi i have been on urso for a year now and i have not put on any weight in fact i may have lost some.

I put this down to feeling really sick first thing in the morning and i carnt eat anything till about 12 pm.

Then i feel sick again in the evenings so i have to watch when i eat . I wish i felt different but i think p.b.c affects us all differently.


Yes, I have gained weight, about 15lbs. I am 58 and was diagnosed 2.5 years ago. For me it started with having my gall bladder out. It seems as though I went it to surgery thin and came out bloated which turned to fat that never came off. It was very depressing, I had been the same weight for about 20 years. I think it was a combination of changing jobs, a very physical one that I couldn't handle anymore, to a sedentary one, my age and the meds. I have seemed to stabilize now. I did need all new clothes nothing fit. I also seem to have more energy now if that is any encouragement.


YESSSS!!!! I have put on a lot of weight since taking ursodiol. I hate that and I just don't know what to do.

This started in 2012 and docs keep saying lose weight. My weight was fine before this medication. People that know me look at me like what 10 pounds of food did you eat today? I am very frustrated as my energy level is not there to do much exercise. I am stumped any suggestions out there? I am a female in my 50's.


Oh yes I do?.i only take half dose urso as don't tolerate it well but my bloods respond well to it.i walk my golden retriever twice a day and work-don't sit down much til 8 on an evening.ive tried dieting and had to go as low as800 cals a day to lose anything which is not good nor healthy.it does say it can put 5lbs on but I've put a stone on steadily as you say since starting urso.someone said it's well liked in body building sites tho can't say mine is muscular.im getting concerned now as it's taken me over my health bmi weight.seems that ,as with all medication,what helps one causes another.if you find a magic cure please let me know


I was diagnosed 2005 and the weight crept on more following taking Urso. I managed to lose 1.5 stone by reducing food and running at the gym over 2.5 years but am having issues keeping the weight off since damaging my ankle so no longer able to run. I walk minimum of 4 miles a day with the dog but am finding it really hard to lose let alone maintain.


I'm exhausted just thinking about all that exercise. I wonder if diet pills would help or is that me inviting more trouble for myself and my liver?


Diet pills might work but can still affect your liver so buyer beware. Slow and steady, use a food diary and be honest about what you eat is the only way and whatever exercise you can manage is a bonus ?


I have suffered with not so much gaining weight (maybe about 5 lbs) but my problem has been losing. I have to restrict calories and the TYPE of food I eat more to lose. I was using My fitness pal (an app through the Iphone) but I have rejoined Weight Watchers. I lost 62 lbs on Weight watchers 5 years ago, and I am trying to lose about 21 more. I've lost 7 so far. What another said, its much harder to lose now with PBC and I lose much slower. Even if you can get some movement in. either it be housework, or yoga (I use my Wii fit yoga and some of the games on there) I seem to be able to do those ok. It will really help.

Its worth doing though. I know in the US if you ever have to go to transplant you need to be close to your correct weight or you may not make the list. That is what my doc said.


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