This is the medication that I am on 2 apparantly slow down the sclerosing process of my liver, was wondering if anyone else was on this medication and if you have had any weight gain with it? I have put on a lot of weight recently and it seems to be since I started taking this. Thank you! For those who commented on my previous question thank u for ur support, my liver biopsy went good! Just waiting for the results!
Although I was only diagnosed a few weeks ago, I have been on these tablets for about four years. I am on 750mg a day and I haven’t had any side effects with them whatsoever. Happy for you your biopsy went grand, the lying still afterwards is worse than the actual procedure. I’ll pray you have the desired results you are looking for.
Yes I'm on this medication also. It's the only medication I take and I've been taking it for almost 5 years with no side effects. I take 8 pills a day which I believe is quite a high dose.
UDCA is the only medication that some doctors prescribe for PSC. There is no proof that it slows down anything, but when taking low level doses (~15mg per kg of bodyweight) it improves the liver function blood tests by making bile more fluid. The theory is that since the bile is more fluid (and less toxic, or less agressive to the bile ducts) the bile will flow better around the obstructions and cause less infections. There is some proof (one study) that too high a dose (30+mg per kg of bodyweight) of UDCA is detrimental and should be avoided. I took 25mg per kg of bodyweight for years before this study and did not have any problems with it. I now take the 15mg per kg of bodyweight. I did not put on any additional weight because of UDCA.
I've been on Urso for over 5 years with no side effects...at least no noticeable weight gain. My doctor (Viktor Ankoma-Sey in Houston...an excellent liver specialist) has been adjusting my dosage to balance the benefits of the meds vs. the possible side effects. I am currently taking 2 x 300 mg capsules twice a day. My doc says there are possible adverse side effects to taking too high of a dosage and that there have been some recent studies as to the benefits of a lower dosage regimen. Talk to your doctor about the side effects and correct dosage and have him consult other specialists about proper treatment methods.
Glad to hear your biopsy went well.
I have been taking ursodiol since I was diagnosed with PSC in Feb. 2006. There is no other treatment, per se, for PSC except this medication. Chaim described it best above. It makes the bile more fluid, thinner, so it flows better through the contstricting bile ducts with PSC. I haven't had any side effects from it. I was never on a high dose. I weigh 130 pounds and take 500 mg. twice a day. Perhaps weight gain is your response to emotional stress? I tend to lose weight when I'm stressed, but especially so when I have an attack of cholangitis and have to spend time in the hospital. The infection seems to mess with my appetite and I don't eat as much. And that's about all I can tell you. I am sure you have regular appointments with your hepatologist now, so be sure to make a list of questions and take the list to your appointments.
Thank you all, in the final year of university so wondering if it could be stress related as you suggest danabee, I have lots of work to do! I wil ask my doctor when I see him again though. I was 10stone 2 which is normal for my height but suddenly have gone up to 10stone 14 which was a shock! I am also on 2tablets a day of this medication as well as pentasa for my colitis
I have been on 1000mg/day for less than a year, and have no side effects. When I had several attacks, durning last year, I lost a substantial amount of weight. Now, being on Urso, I have my appetite back and have gained weight. Perhaps your weight gain is because you are now eating more/better.
Slowing down the Sclerosing process is absolutely NOT TRUE. It's a drug kind of like my HEART doctor told me: 'those heart medications DO NOT help your heart...they are just working on the process that decreases the NUMBERS so your doctor doesn't have to look at them anymore.' Be aware. My doctors at Loma Linda, CA are NOT using URSO. They told me that [yes it was a high-dose study] but they are not prescribing URSO in any dose. I went with my doctors and am NOT on URSO. Others will FIGHT about keeping their URSO.
Mona: PSC/Crohn's
Umm....my husband is on PMS-Ursodial - C. I wonder if this is a similar product or the same thing. It is suppose to help prevent cancer of the ducts. As far as i've heard and read there is no evidence that it slows down the process of needing a liver. He has not gained weight while on them, but he is on a very low dosage.
John, if this is the same as straight up Urso or ursodiol, I have been on it for 11 years - since I was diagnosed. I have never had any problems or side effects from it at all. Is it possible that it is water or fluid retention? That is the only weight gain I have had on and off over the years... That and the enlargement of my spleen added a trace amount, as well.
Hope this helped a little bit, and you soon find the answers you need to put your mind at ease.
~Pandora
I have recently been taken off this after 5 years - as the overall results apparently show no significant impact on PSC. Weight gain and sleeplessness were 2 side effects I suffered from and I actually feel better since I stopped taking it. However, my liver readings have shot up - I am still waiting for the verdict on that.
Hey sue, if you don’t mind, what was your LFT results like? I have mine posted on a different discussion post, just wondering if yours were maybe like mine or anyone else’s for that matter. I was really only diagnosed due to elevated LFT’s, I personally don’t think that is enough. Thanks
I used to take these capsules and do not any longer. Please be aware. There is -no proof- whatsoever that this medication will slow the progression of the disease. I went off of them after being on them for 4 years when I went into portal hypertension and had a stent inserted. My doctor, considered the best in London, said a paper came out about as any adverse affects as there are positive. So, you are free of course, to take this or to leave it, but I have now for 3 years been managing the disease on nothing but vitamin supplements, a healthy diet and lifestyle. Good luck to all of you, it is a very complicated, mysterious illness and nt many straightforward answers from doctors, who also are just doing te est they an to understand the illness.
There was a point in time where doctor's believed that a combination of Urso and azathioprine (also known as Imuran and actigal) would help slow down the progression of PSC. The respondents above are correct in that there is no solid evidence that these drugs are of any help to the disease. I was on Urso for 14 years with no negative side effects, but as you probably know, each case is different. I no longer take the drug because I have had a liver transplant. Many people that have PSC also have some form of IBD whether it be UC or Chrones disease. If you have an IBD you have an increased chance of developing colon cancer down the road. There is some evidence of Urso being helpful in decreasing these chances. Just an additional tidbit of info. Doctor's at the University of Maryland Baltimore are now finding that there is another type of UC that they are proclaiming is PSC related UC. They are continuing to collect data at present time.
I was on Urso Forte for a few years. Then I had a feeling I should stop taking it so I did. A year later my doctor told me to stop taking it because recent studies showed that individuals taking the medicine actually had a greater need sooner for a liver transplant. So I'm not taking any medication at this time for my PSC.
Hi Stacy, I hope you don't mind if I ask you a couple of questions. I want to discuss Urso with my doctor (a hepatologist at University of Colorado Transplant Center in Denver) and ask her if she thinks I should continue taking it. I understand that you had a feeling you should stop, but I'm most curious what transplant center you go to, first. Also, is your doctor a gastroenterologist or a hepatologist? I'm just trying to gather some information for my own care. I found out conclusively that I have portal hypertension. I was diagnosed in Feb. 2006, so I've had PSC (officially) for 6 years. Do you have portal hypertension or any other complications like that? Thanks for helping me out.
My doctor is Shahid Malik, MD at the Center for Liver Disease in Pittsburgh, PA. He is a hepatologist who specializes in complications of end stage liver disease. http://www.dept-med.pitt.edu/gi/faculty_info.aspx?fp=5471
He didn't initially tell me to stop -- I actually thought he'd yell at me for it! haha ... I just had a gut feeling that I shouldn't take it anymore. He confirmed the year after. It was actually the first time I met him, he had just started at UPMC. I can't find the link for the study -- but he said that out of 150 people with PSC, 75 were given Urso Forte, the other 75 were given a placebo and were monitored for 10+ years -- of the 150, the 75 on Urso had adverse effects and needed a transplant sooner. The Urso made their blood work look better, but actually caused some damage to their liver. When he started at UPMC he was taking all of his patients off of it.
The only other thing I'm aware of that I have is UC.
Of course, talk with your doctor before stopping any treatment ... this is just my experience. I feel a lot better since I've stopped taking Urso -- more energy, in better shape, better appetite.
Hope this helps!
Thanks so much for the info, Stacy. It helps immensely. I think PSC is so mysterious an animal and any more information I can gather about it, I'm happy. And you certainly go to one of the top if not the very top liver centers. If you have more energy and a better appetite, and I knew that could possibly happen for me, I'd go off Urso today! But I will talk to my hep. Thanks again, and good luck!
I know all the research, and still take UDCA. When taking the right dosage the quality of life is better. No guarantees for the long run.