scared the urso will make me gain weight

[sherikaye]

I was diagnosed with PBC 3 years ago. I don't always take my urso because I feel the side effect of weight gain is too scary for me. I had a gastric sleeve done 2 years ago and lost 80 lbs. Im terrified I will gain it back. I started rapidly gaining after taking the urso, so I read up on it on the internet and found out it was a side effect of the medication. I told my doctor I would not take it anymore and he told me to try just taking it once a day and see how that goes. My liver enzyme levels are 4 times higher than normal still and now he is doing a new liver test on me tomorrow. Im terrified i sacrificed my liver for my weight. Is anyone else out there gaining weight from this drug?

[Chrisprio]

Hi Sherikaye,

My heart goes out to you reading your post. You have obviously done really well regarding your weight loss but your weight doesn't define who you are. You will, I'm sure have many more qualities that make you who you are and I'm sure you are beautiful whatever your weight. I do understand that gaining weight sounds scary for you and whilst I haven't gained weight since starting urso I don't know how it will be for you. All I can offer is that you find good people to talk to, friends or maybe a counsellor and of course the PBC foundation. Get the support you need to help you through. I hope all goes well with your test tomorrow, best wishes Cx

[kingerm]

Weight gain is not a siflde effect of urso. It is a side effect of pbc. Therefore if you take urso your blood tests will improve and your liver will cope better with food. Just eat healthily and exercise as best you can but I can recommend staying on urso. My lft s are coming down a lot since I started taking it in November. It's like passing a test without studying. Makes me happy every time I get my results!

[Jackie71]

You need to keep taking the Urso, I like you lost weight prior to diagnosis and have managed to keep it off for 5 years by eating to protect my liver and not from dieting - have to admit that I did put weight on over Christmas but it will come off once my body settles down. The Urso worked so well for me that I wouldn't stop taking it, it seems to be the only option open to us.

[Hidden]

Hello sherikaye.

I haven't actually read on the Patient Information Leaflet (PIL) about urso causing weight gain. I think for some they can gain weight due to the urso doing a better job perhaps and our digestive system dealing with just that - digestion - much better.

For me the urso hasn't caused me any weight gain in the 5 years I have been taking it but for me I suppose I am a bit of a false contender regarding weight here due to the fact I itch late at night until around 5-6 a.m. and probably with using energy during the night in fidgeting and moving about I am more than likely not going to gain any weight. I tend to cut off from eating later in the day after the evening meal. I just find I feel better about this. My way of thinking is perhaps it gives the digestion system a bit of rest plus I have for some time, even before PBC, find I dont' like having that full feeling.

Regarding medications and weight gain it has to be remembered that certain medications are known to make a patient gain weight but as stated I've not heard about it re the urso. My sister had a brain haemorrhage November 2013 and she has managed to start putting herself back together but she has gone from being around my size (she had always been the same weight) to piling on nearly 3 stone since hospital discharge Sept 2014. I know for a fact that a certain medication she is on is known to give you weight gain but as it was stated, "the benefits outweigh the risks".

I know in your situation though I never wanted to have to take a medication (I call it a supplement as opposed to a medication simply because we are adding an addition of bile to our system) but I took it to see and my LFTs did start to come down. I'm still here over 5yrs from diagnosis and I am not sure how things would have panned out had I not have taken it now.

[sherikaye in reply to Hidden]

What is a "stone"

[LisaC22 in reply to sherikaye]

Hi there. It's a measurement of weight used certainly in the UK & Ireland (& possibly elsewhere). Are you in the US? In any event it is the equivalent of 14lbs. I've been on. URSO since May 2015 and have not put on any weight. My own view is that it's (hopefully) going to keep me alive & healthy for longer so it takes priority over everything else. Similar to the other posters it has brought down my enzyme levels considerably in that time. Still a bit to go but I'm getting there.

[Hidden in reply to sherikaye]

Hello sherikaye.

Noticed LisaC22 has filled you in there. I know when I was weighed pre and post PBC diagnosis it was said to be in kilograms. I am not overly-familiar with kgs. Here in the UK we were supposed to go metric at one point some years ago but it seems that the imperial measurements that I was brought up to use are still in force and recognised. Strangest thing is though I prefer to use the imperial for baking buns (or cupcakes as it seems in America if that is where you are from?) and my own weight (I don't bother weighing myself that much, have always gone off how my clothes fit) I do measure items (ie a watch strap for instance) in cms, prefer though I can translate those to inches and feet.

[dollydaydreams in reply to Hidden]

I am still lbs , ounces, feet and inches, yards etc, cant get on at all with metrification :o)

[Tigger858]

Hi sherikaye, I have gained weight since diagnosis and totally understand where you're coming from. People who don't have a weight issue don't understand how frustrating it is and how unhappy it makes you. I joined a gym, had 3 personal training sessions a week and carefully monitored my diet. Kept this up for 2 years and it made no difference whatsoever to my weight. My doctor said I was much fitter and had to resign myself to being heavier than I was used to (was size 12/14 now 16/18). I have continued to take the Urso throughout as I believe the weight gain is caused by the PBC not Urso. My liver is now functioning well. I think I'll probably always battle with the weight. I'm going to try the 5:2 diet now to see if I can shift a few pounds. I hope your appointment goes well but please start taking the medication as advised by your doctor. We can keep battling the weight issue but if our liver fails then that's it. Take care x

[teddybear7]

I've lost 5 1/2 stone. 77lbs or 31.75 kgs for USA clarity. I eat for my liver low fat low sugar & as healthy as I can. I take my urso religiously. It's not easy but do able. So don't panic take your urso & enjoy life as best you can. Xxx

[sherikaye in reply to teddybear7]

I eat a high protein, low fat diet. I don't eat much. ..maybe 1/2 cup at a time. I don't really exercise due to knee issues but I'm going to address that now. Looks like double knee replacement time

[NotorDJP]

Urso didn't make me gain weight. I am already overweight, and had started to gain some before I went on URSO. Mine I think started because I'm going into Menopause, but I also had Hashimotos too. If anything the URSO has helped me digest food easier so it goes through my system faster. I wouldn't worry too much. You just need to make sure you eat healthy, stay away from fried foods, and try to keep your protein up. I know if you had gastric sleeve, you know that already, but the URSO will help you survive. PBC is nothing to sneeze at and URSO is all we have. I would rather be a little chunky, than have my liver trashed with cirrhosis.

[dollydaydreams]

Hi, I havent gained any weight in fact i lost weight and i have given up smoking, well using an electronic thing, I think it affects everyone differently, some people eat all day, small meals, i dont, i have breakfast and dinner and take all my urso with dinner, i thinks it's trial and error. I myself do not cut any foods out and just eat as normal, but it's each to their own so to speak. If i were you I would take at least one a day and see how it goes to start with as that way you will at least be getting some urso and build up to your stated dose. good luck with it and well done on your weight loss :o)

XX

[dollydaydreams in reply to dollydaydreams]

PS. forgot to say I was 15 stone befor DX and went down to just over 7 stone and now stable 8 1/2 stone.

[Alley27]

Ok; simple choice hun: Vanity or Life x

[sherikaye in reply to Alley27]

Really??? I worked really hard to lose 80 lbs. I honestly would rather die than gain that back. It's not an option for me and I dont appreciate your Snyde comment!!!

[NotorDJP in reply to sherikaye]

The chances of you gaining 80lbs back on URSO are very very slim. You would have to eat very badly in conjunction with that. Many of us have struggled for some time with this disease and life has a way of becoming very precious in this circumstances. I get where you are coming from, losing weight is tough and I lost 60 lbs myself and gained back about 25 of it. But it wasn't URSO that did it. It was me and my thyroid. I doubt Conniefused meant the comment as mean.

[sherikaye in reply to NotorDJP]

I didn't starthink gaining until I started taking the Urso so it's no coincidence. My doctor told me about a new drug that just came out that is better than urso, without the side effects urso has.

[Yankeerose3 in reply to sherikaye]

I'd love to know what that is

[SunnyXXOO in reply to sherikaye]

Out of curiosity what medication is that?

SunnyXXOO

[chynablue]

I've been on urso 8 weeks and I've lost 9 lbs in that time.

I would warn against focusing on weight because it takes the focus away from overall health.

A healthy body is going to be at a healthy weight. If I take good care of my liver, which includes taking my meds, and eat a healthy diet and get some exercise then I should be at a healthy weight. If I am not, then there might be something else going on that needs to be addressed and diagnosed.

[dianne721]

I've been on Urso for a year...no weight gain. I eat clean, and try to exercise as much as possible. My numbers are improving with each lab report, so Urso seems to be working. Try to stay with it.

Prayers and good wishes.

Dianne

[Hidden]

I haven't gained any weight since using urso. once i lost weight when i first got diagnosed I have maintained at between 63-65kg. What i find makes me fluctuate is if I eat more than I need! particularly carbs. Small meals, regularly is still best I find, to try and keep my energy levels stable.

[DannB]

Hi, yes, I'm struggling with the same issue. My specialist says it's not a side effect. Sent me to dietician who said my diet was healthy and to up my treadmill to 7km a day....

I've gained 17kg since starting Usofalk. I need answers too!

Good luck...

[ROprish]

I've been on Urso since 2009. My weight has bounced +/- 20 lbs. the whole time. I think it is the medication, but more the fact that your liver is no longer able to filter out fat and cholesterol either. Plus my age...it's harder to lose when you hit that magic age of 40+. I went off Urso for a brief time and got so sick and figured it wasn't worth my life for those extra 5-10 pounds. We all have a choice. Whichever you choose, good luck.

[Caseymayr1102]

Hi hun

I gained 10 pounds within a month of starting the generic.

However, my pharmacist suggested getting the brand name instead. He told me that he’s had patients do better & gain less on the brand name. It can be the fillers added to the generic that people have issues with. So I told my dr the generic didn’t agree with me & she prescribed the brand (Actigall 300mg 3 times daily)

Since starting brand a few months ago, I’ve dropped 8 pounds. While it’s still slightly above my normal weight, it’s MUCH better.

Don’t sacrifice your health. Just ask your dr if the brand name can be prescribed instead of generic. Just try to balance it all out & get your numbers lowered.

Take care & let me know if you have any other questions.

Jules

[Terri-Lynn]

Sherikay,Before being diagnosed with PBC, I was heavier than I am now. Since I began taking URSO, I have increased my exercise daily and have been slowly losing weight and ok with my progress.

I can totally understand your fear about gaining the weight back but ask your GP to refer you to a dietician for some additional support. Since I also have other things wrong with me such as Crohn's I try eat gluten-free which I feel is helping me and do feel better. I also make cafeine free herbal tea daily (Good Earth's Sweet & Spicy) drinking about 100 oz daily. It helps to keep me feeling full without adding calories.

Please try and take the recommended prescription of URSO so your liver damage doesn't become worse.

All the best, Terri