Urso and rapid weight gain

[Rachie34]

Hello there,

I've been searching for answers on this for a while now, but don't seem to be getting straightforward answers!

I was diagnosed with PBC in October and have been on urso for about 10 weeks now. In the last 10 weeks, I seem to have gained a lot of weight quite quickly. I'm almost 14lbs heavier than I was before starting urso, and this is starting to worry me - I can't keep gaining at this rate!

My diet and lifestyle hasn't changed, I'm doing everything the same as before I started urso. I mentioned this to my GP last week who said weight gain is not noted as a side effect of urso, so I'm confused! I'm now looking at blood tests for answers for the weight gain, such as thyroid tests.

However, I do feel urso is the culprit. But can it really cause one to gain so much weight in such a short space of time?

If anyone has experienced this, any tips for getting the weight off (ideally as quickly as it piled on!) would be appreciated.

Thanks!

Hope you all had a good Christmas by the way! x

[Skypony]

Hi, I know it can be demoralising to gain weight, but you certainly can tackle it. I haven't found this to be a side effect of Urso but I know I'm less active in the cold months - could that be the same for you?

My regime is fasting between 8pm and 8am, then breakfast is porridge + mixed seeds, lunch and dinner are about 50% vegetables + low fat protein and small amount carbs. I do 45 mins strength exercises every other day (which I find the hardest thing) but I've lost a stone in a year this way. Do let us know how you get on, and best wishes.

[Rachie34 in reply to Skypony]

Hi, thanks. I will have to make some changes to my diet/lifestyle. I’ve got plenty of ideas, just hope I see results!

[Ellewoods33]

Weight gain is listed as a side effect of Ursodiol. I have gained quite a bit of weight but I also stopped smoking so I’m not sure which one caused the issue. I’m going to start my bike riding again on January 1.

[Wocket in reply to Ellewoods33]

I gave up smoking 9 years ago and put on quite a bit of weight. 2 years ago I started taking Urso and put on about a stone. 🙁

[periwinkle88]

Weight gain is definitely a side effect for some people who take ursodiol. Here is a study you can show your provider: ncbi.nlm.nih.gov/pubmed/128...

My doctor sees a lot of patients with PBC and he warned me prior to starting that there was a good chance I'd gain weight - this based on his experience with over 250 other PBC patients. Like you, I continued as before with diet and exercise after I started the ursodiol, but gained weight rapidly. I gained 20 pounds the first year on ursodiol, which then bumped me up to a higher dosage (I went from 900 to 1000 mg. per day), and then I gained about 10 more pounds - 30 pounds total since I started a little over two years ago. Now I've been stable at this weight for several months, but can't lose any without starving it seems. This has been a huge frustration as I am very careful with my diet and exercise. I recently saw a nutritionist for help with weight loss. The long story short was that she felt I'm eating exactly what I should be calorie-wise to lose weight but I am not losing at all, so she suspected the ursodiol might be slowing down my metabolism. I've also heard that we absorb fats differently while taking it. In my case, I also have hypothyroidism and my thyroid levels aren't always optimal, and I hit menopause around the same time as I started the ursodiol, so I'm sure those issues also factored in. But I know that the ursodiol is the prime culprit in my weight gain. I'm sorry you're having the same issue.

[Rachie34 in reply to periwinkle88]

It’s so frustrating isn’t it? There’s got to be a way around it. I think The root of the problem is, medics are still learning about PBC.

[Tootoot]

Its been a year since I was diagnosed. I’ve gained 14 lbs and struggling to get it off. I exercise regularly and eat healthy. I think it’s the Urso. I’ll just keep trying to get it off

[annscot]

Hello! I don’t often reply! I was diagnosed with PBC many years ago and also have under active thyroid and a few other issues. I am over weight after taking urso and find it extremely hard to lose weight although I stick to a healthy diet ocassionally eating chocolate!!! My younger sister who had PBC was on another medication...had a successful liver transplant but unfortunately passed away age 56.

I am amazed that I am still here aged 74! URSO is my saviour and being ‘fat’ when many of my dear friends have passed! Sorry but my opinion is live your life

[Rachie34 in reply to annscot]

Yes you’re right, being “fat” and alive is much better than the alternative. But at age 34, I don’t want to keep gaining weight and face other health issues due to obesity! As I’ve got PBC, I want to keep as healthy as possible and enjoy life. If I could at least maintain the weight, it wouldn’t be so bad. So frustrating!

[annscot in reply to Rachie34]

Rachel it is shock to find out you have PBC but keep positive! My niece also has PBC and in time got back to her normal weight! Your weight should balance out after 2 years! Hope you don’t get hair loss as a side effect!! I have lost my hair! Been wearing a wig for the past 10/12years. I have a healthy energetic and happy lifestyle. Make sure you take the correct dose for your weight!

[annscot in reply to Rachie34]

Almost 76 now and no longer ‘fat’. I joined WW online last February and lost 2.5 stone. I’m very happy with weight loss although keeping weight OFF is challenging. Mindfulness is helping me. Good luck and keep trying as I never thought I could do it x

[VeeWat in reply to annscot]

How much urso do you take

[annscot in reply to VeeWat]

Depends what weight you are? I take 1000 a day! All together in the evening.

[annscot]

Enjoy your future and be happy 😁

[Caseymayr1102]

Hello

I absolutely had the same issue!

I too gained almost 10 pounds within a very short time frame once I was put on Ursodiol. After doing some research, I noticed there were others having this issue. My dr said the same thing...it’s not a side effect. I requested the brand name (Actigall) & take 300mg 3 times daily. Since getting off genetic, my weight dropped 8 pounds. So there’s clearly a connection. The pharmacist said it can be the fillers used in generic & it is possible that generic could cause it. I also have found the brand to be more effective at treating my PBC.

I’d consider approaching your dr & tell them the generic isn’t agreeing with you & request they prescribe the brand name.

I hope this helps! Let me know if you have any other questions about it.

Take care,

Jules

[Rachie34 in reply to Caseymayr1102]

Interesting. Thanks!

[Vespa27]

Hi Rachie, I gained weight when I first went on Urso. It settled down eventually. I agree that doctors say they don't know about weight gain as a side effect...but it happens. I switched from the tablets to the liquid form, its more expensive than tablets but it works better for me. I am also on steroids at the moment, but I hate what they are doing to my body. I have gained nearly a stone in 6 weeks, not good at all and like you, my diet has not changed nor has my lifestyle. I need off the horrible things, but recently had a nasty flare and unable to see consultant until 10th January. I am deciding tonight to lower my dose of steroids over tbe next two weeks myself but gradually. I also agree that there could be other underlying causes for the rapid weight gain...but urso is also a factor if its the only change.

[casegaro in reply to Vespa27]

It seems I can’t find the liquid form here in USA. where do you live??

[SunnyXXOO]

Hi Richie33, I believe it’s probably related to the Urso that caused your rapid wt gain. If you read the side effects on Urso, it always says

“uncommonly side effect rapid weight gain”

I know there are people in this forum that are using Ursodiol, common complaint wt gain

SunnyXXOO

[Sona_akb]

Hi Richi, I’ve started urso 6ws ago but haven’t experienced weight gain yet. Although, as I’m underweight i would appreciate any weight gain😅 why didn’t this side effect happen to me??????

[Rachie34 in reply to Sona_akb]

I think it just shows medics don’t quite know enough about PBC, urso and how it all works just yet!

[janine541]

Hi

I find it dosent help with weight gain. But have started slimming world which ive lost nearly a stone in 5 week.

[Ash322]

I also asked my GP about weight gain and was told that it is Not a noted side effect of URSO.

I have been on it for years now and my weight has ballooned to over 200 lbs. They don't

seem to care. Other than starving to death, I don't know how to lose the weight. Have

COPD as well and SONK in my knees, so find it near impossible to exercise. Live on my own

with next to no visitors.

Life is pretty miserable. ( Having a pity party now )