I started on urso about 1 month ago and hav... - PBC Foundation
I started on urso about 1 month ago and have noticed I'm gaining weight anyone had this problem or am I eating to much help xx
Hi Karenlesley, I have put on weight since starting Urso back in March of this year. However, one of the reasons I was going back and forth to the Dr was because of unintentional weight loss ( I lost about one an a half stone in less than a year) but when I look back my appetite had also diminished, this has returned since starting Urso, so I guess I have a similar dilema, is it the Urso or am I just eating more. Sorry,that wasn't much help really, was it?
Hi
No I have not put on weight on urso, which I have been on for nearly 2 years now.... Time flies. I was allergic to the capsules but tablets are fine.
Lou
Hi there, I put on 1kg initially but I was on steroids as well when I started it back in May. Over about 6 weeks. Then I noticed I was eating lots but weight wasn't changing, now that I have reduced steroids to a near minimum dose I have actually lost a couple of lbs. I think it just takes your body a while to adjust. Have to say, I seem to be eating a lot but then it's mostly low fat good stuff. How much have you put on?
I have found that URSO has made me put on weight and Ive had to drastically rethink what I eat a day to keep my weight stable.
I've put on around a stone in the 22 months I've been taking urso. I've always had a weight problem and have been on every diet you can think of. Before I was diagnosed I had lost 18 pounds in 6 months on a healthy eating plan. I have continued on that plan but have gained the weight since being on urso. It seems to fluctuate, I can eat the very same foods over two days, loose weight one day and put on the next, its a real puzzle. I find I can't eat large meals as I feel very bloated so tend to eat smaller meals more regularly. I also find that I gain weight if I eat bread, potatos and pasta/rice on a regular basis so avoid when possible. If I do eat pasta or rice I have wholemeal, bread its normally wholemeal or wheat/spelt/rye, potatos boiled/jacket or mash with no butter.
I have muesli or porridge for breakfast, a piece of fruit or yoghurt around 11am, a slice of chicken/turkey/tuna, small salad or soup and crispbread for lunch, fruit or yoghurt around 3pm and small piece of fish/meat with veg/salad for evening meal. I don't drink alcohol, I drink water or 2-3 cups black coffee a day or recently dandelion tea or coffee which is very pleasant and claims liver kind, The tea is like normal weak tea and can be drunk like other herbal teas. The coffee doesn't taste like your normal coffee in fact very much like a normal cup of tea and can be drunk with milk if you wish.
I have in the past had dandelion tea but my preference is one I found not so long ago Peppermint and Licorice. I only have one cup a day if I have one. I also buy Barley Cup which resembles coffee powder/granules and when made up with a splash of milk you'd think you were drinking a weak coffee but it has no caffeine in it at all.
I personally am more concerned about fat consumption than anything else. I always did take care over fats but nowadays I take even more care. That's not to say tho' that I don't have a very little butter on a toast (I make one with a small knob of butter, the other with just honey).
I don't know if this is true but I once did read with regards to people dieting and the fact that if you do starve your body it is possible that it reaps it back and that is how one gains weight. I'd not know.
Also I find that still being a menstruating female (I am 48) the wk prior to the cycle again, I can find that I gain several pounds which then just vanish when I am in the cycle. That's always happened for me.
Hi I tend to loose weight and have lost seven and a half stone since I got ill, I eat a lot of fatening food and still am I have been on urso for two years and I cannot put any weight back on no matter how hard I try, in fact urso makes me feel bloated and I feel a need to throw up at times to get the bile out of my stomach, I now have been put on 1 urso a day, I would rather have none as i feel better then, strange how it affects us all differently.
I was just told by my gastro that urso desolves the bile, I though it was bile, just wish someone would give a straight answer.
Hello Linda.
This is what urso apparently is (I quote from a site):-
"Ursodeoxycholic acid (UDCA), also known as ursodiol, is a compound produced from bile by the action of intestinal bacteria. Since this bile acid is not produced directly by the body, it is known as a secondary bile acid. One of the functions of bile acids is to act in the intestine to help digest fats and fat-soluble vitamins from food. Ursodeoxycholic acid has been used in pharmacology to dissolve gallstones made of cholesterol, and to treat liver disorders. It has been used for a long time in both human and veterinary medicine.
Bile is produced in the liver, stored in the gallbladder, and sent through a duct into the small intestine. The majority of bile consists of derivatives of cholesterol called bile acids. There are a number of different types of these compounds. Their diversity is increased by the action of intestinal bacteria on the body’s bile acids. Some of these acids are toxic and are generally eliminated by excretion into the stool.
Bile acids can be reabsorbed into the liver. When the liver is healthy, it can eliminate toxic acids. If it is damaged, however, the toxins can accumulate and further damage the organ. Ursodeoxycholic acid improves the flow of bile both into the gall bladder, and from the gall bladder into the intestine. The toxic bile acids are then eliminated from the body."
In a nutshell as I understand it, urso acts like a detergent with fats in the system and helps bile flow which is a bit impeded by bile ducts that are being slowly damaged.
So are you saying you think he is right as it does not feel like it is desolving or getting rid of my bile, I can more or less tase it. I stopped smoking 36 weeks ago karen and then started again in week 36:o) I felt like i was going to commit murder in the end, and i still didn't put weight on.
Well it doesn't sound like it to me LInda.
I think reading this (and I noticed that the info is very similar in explanation on other sites and even on the manufacturers for the actual urso), the important part is this from the quote:
"One of the functions of bile acids is to act in the intestine to help digest fats and fat-soluble vitamins from food."
There is apparently diff types of bile acids, one is deoxycholic acid, another chenodeoxycholic acid and I am certain I have stumbled across another one.
Interestingly, I have also found this about about bile (check out Wiki)...
"Since bile increases the absorption of fats, it is an important part of the absorption of the fat-soluble substances, such as the vitamins D, E, K and A.
Besides its digestive function, bile serves also as the route of excretion for bilirubin, a byproduct of red blood cells recycled by the liver. Bilirubin derives from haemoglobin by glucuronidation.
The alkaline bile also has the function of neutralizing any excess stomach acid before it enters the ileum, the final section of the small intestine. Bile salts also act as bactericides, destroying many of the microbes that may be present in the food."
Also I have discovered the composition of bile so here goes:-
'Bile is a composition of the following materials: water (85%), bile salts (10%), mucus and pigments (3%), fats (1%), inorganic salts (0.7%) and cholesterol (0.3%)'.
No I couldn't believe what i was hearing either, if fact I threw a bit of a wobbly at my appoint ment, i told him the main consultant was rude , and that i had never seen him and he had not so much as said good morning to me, and as much as I liked him I would of appreciated at least one consultation with the consultant and not just see registrars and trainee doctors Who did not know what she was doing, She tried to have me admitted with a DVT and i didn't have one!! Then she sent me to the bone clinic that i told her my GP did not want to send me too, and they were reading someone elses medical notes and not mine last time I went, she kept saying that wasn't my faul, well it certainly wasn't mine, I am getting fed up and sick of the lot of them,
so far I have been told I had none hodgkins Lynfoma after they had cut me open and sent a nodule off I didn't have it, then they took out an ovarie I DIDN'T HAVE, THEN i WAS DIAGNOSED WITH pbc AND NOW they are sending my biopsy off to a liver unit ( two years later) then I get told I don't have osteoporosis and I have arthritus, till I asked her was she sure she had my notes, and no she didn't and now urso desolves bile.........wwhat the hell??
Sorry about my spelling.
XX linda
You poor thing where are you based! i have my app tomoz not really looking forward to it as its been cancelled three times I defo have PBC and fibromyalgia I take each day as it comes and going back to work in Jan will be good to see how I manage. I do think though that you need to see a different doctor and also another consultant in a different hospital and get some definitive answers to whats going on i can only imagine your frustration. I do hope you get some proper answers though. Best of luck xx
I am seeing the main consultant next time of so they say and I am in Llandudno in North Wales, a very small cottagey type hospital
Forgot to say my GP said I may have fibromalga but it's difficult to treat and gave me some Tramadol and that was that.
Oh ok for the fibromyalgia I have amytriptilene think spelt right, its primarily an anti-depressant but its also used for pain relief such as the pain from having fibro it does help but not cure this is also the stabdard treatment i believe for fibromyalgia I saw a rhumatologist which confirmed the treatment my gp had prescribed. I find swimming is brilliant also. the pain i get is muscle joint and fatigue and the worst pain is probably in my foot particulary my heal when wearing flat shoes I want to cut my foot off it that bad my trainers are god send but really dont look good with dress and tights 
I also do alot of knitting but i have had to cut back on that due to pain in fingers and wrists. Unless I have had really busy day (have 5 children) I find I dont need any other pain relief if I do I take paracetomol and normally does the trick or a nice lie down being cold is horrible so my house is kept warm dreading gas bill. I really feeling for you want to send my gp to you as she has been amazing since seeing her in late june this year I really hope that consultant gets you sorted if not it might be worth changing gp practice even if is a further trek even to just give you re-assurance. Best of luck to you I can offer the little help of what I know and hope it helps you a little I really dont think tramadol is the answer though take care x
Hi. giggles, I have had amytriptaline in the past and it didn't do a thing for me then so haven't tried it again, I also like to knit ( dolls clothes to sell as I don't work anymore) but my hands ache if I do too much and I also have foot problems but mine is toes and arches and also my ankles ache and swell more and more as the day goes on and I could also scratch them to bits.
all I can do is like everyone else does and keep smiling.
Two words -Mayo Clinic - was going thru something similar was having to ask for the tests that was needed. A friend pushed for me to go to Mayo they gave me answers on the first day and was cheaper and they had way more knowledge . They even sent me home with a plan to fight this stuff. I still have issues but I'm not near as miserable and my numbers are greatly improved. I'm so grateful that I went.
I've gained 1 stone but I don't know if its the urso or eating more food or the fact that I've stopped smoking 8 weeks ago or a combination of all 3 I think I need to watch what I am eating but I can't miss meals as that makes me feel ill xxx
Hello all.
I've not gained any weight at all on urso and today marks the end of my 2nd year taking it.
I find I can't eat larger meals for a late tea for example and find these days that when I feel full it is a signal for me to cease eating. Altho' I don't pile high a plate with food at an evening meal, I have to say that some nights I find I can't manage a small bit of the tea and leave, other nights I find I can finish. I don't tend to eat anything after 8p.m., find I feel better when I go to bed.
If I don't eat something around 11.30 to midnight I feel really ill when I get up in the morning what do you eat for snacks through the day I'm not sure what I should be eating no ones ever told me it is so confusing xxx
Seems things work differently for each of us karenlesley.
I tend to find myself that I feel best not eating anything after around 8p.m. but it is also fair to say that come the early morning not long after getting up (we rise at 6a.m. 5 days a wk., not much later of a weekend either!), I can feel my tummy start to rumble as I know I am empty.
As lindaclark states on posting just below, I have never been told what to eat and what not to eat. I do think tho' that a diet with a control of fat is prob good for us with PBC tho'. I still eat a bit of butter on toast/bread but not much.
I was just told by my GP to eat what I liked, so i am not much help sorry. I am also starving hungry in a morning and ready for a cooked breakfast of bacon and egg with one slice of bread, other than that I have porridge. for lunch today I had a banana and for diner I am having chilli chicken and rice, prawn crakers and a chilli dip, then a peice of victoria sandwich cake............not a very good diet is it?
Lasy night I had braised steak and potatoes and that gave me a popping effect in my stomach as I took the urso with it.........I still have the upset tummy.
Having started weight watchers 8 weeks ago I have lost almost stone I just half pound away and been losing consistently each week I have not started urso yet, tomorrow is big day however since starting ww I have felt so much healthier I am now 7stone overweight but by following a plan it makes me look at what i eat how much and when. I have tried every diet prior to knowing that I had PBC but since knowing and and being morbidly obese it has made me change and look at my life very differently I have learnt to say NO and its so liberating and I love the fact my jeans just fall down (have been caught out a few times)
So will see how starting urso and continuing ww will effect me I will keep you posted. Just a suggestion try writing down what you eat for a couple days you will be surprised I'm sure. x
I have lost weight since being on Urso, but that is because I have also changed my eating habits. A typical day for me is breakfast gluten free cereal, or gluten free raisin bread with weight watcher's cream cheese and coffee. Sometimes I will have an egg white omelet and toast with butter. mid morning, plain greek yogurt with fresh blueberries. Lunch, salad with mixed greens, tomato, cucumber and crumbled goat cheese or homemade vegetable soup with gluten free crackers. Low fat dressing. I also sprinkle a 1/4 cup of pulverized pistachio nuts on it( a source of good fat that is needed). mid afternoon, fruit or yogurt. Dinner, a low fat or good fat protein source( salmon, chicken, beans), veggies and sweet potato(small portions) V8 juice(low sodium) evening snack, an apple with peanut butter(2 tablespoons), low fat ice cream treat. the total for the day in calories is around 1200. I keep the fat low, but am sure to include good fats total fats 25%. carbs around 50% and protein around 25% or less. I watch the cholesterol, sodium, sugar levels. Yes this keeps be busy, but as time goes on I know instinctively what I can and cannot consume and how much.
I know that is a lot of information, but I have taken a very proactive stance on what I consume. I have lost 20lbs on purpose. I feel so much better now that I am eating a well balanced and healthy diet. I have cut out sugary soda, artificial sweeteners, and snacks loaded with salt. I drink lots of water, green tea and do not drink any alcohol at all. Not all days are so perfect, as I do go out to eat or get invited to someone's home or I just can't resist a chocolate cookie or two. I try to always have some healthy snack in my purse, so I can have it when my energy level drops( gluten free cereal bar, gluten free pretzel sticks, grapes etc.) I take home half of my restaurant meal, since they always serve too much. Most chains here in the USA have a nutritional breakdown of what they serve on their menu.
So by eating something every few hours, and making sure it is liver friendly, heart healthy and supports weight loss. I feel I am doing all that I can. I hope I haven't bored you and I hope this has been of some help. Judi
hi healthangel have you foun gluton free is a good for your liver
Hi, I have also put on weight since starting the urso......I do take steroids as well (AIH PBC), but find the urso bloat me out. I am gluten free and vegetarian and it is proving very difficult to lose weight. I eat a well balanced diet so really I should not be this heavy. I find the fatigue prevents me from exercising much, but I do walk my dog and go hiking once a week in the dales.
xxconniefused
Ive been on uro for a while now and ive also put weight on.im really struggling as ive got under active thyroid as well.ive tried cutting back on portions and watching what im eating but not lost anything.just borrowed a exercise bike from a friend will see if that helps.
