I have small duct PSC and have been statrted on Urso. Has anyone had a good or bad experience with Urso?
EAD3
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I was on urso then got a bad feeling so I stopped without consulting my doctor. A year later I got a new doctor who was happy I stopped and was going to take me off of it. It helps bloodwork look good but recent research shows it hurts more than it helps.
I have been using URSO for the last 8 years - it is working for me. I am essentially asymptomatic (not sure if drug related or is it is just how MY PSC is progressing). All I know is that my liver panels have all come back within the normal range since starting the medication.
There are lots of conflicting views from both patients, doctors, and researches -- my point of view? If it ain't broke don't try to fix it...
Thanks, for that dose of good hope!
EAD3
I agree with Blemmings. I too have had success on ursodiol. I've been on it for two years and not only are my liver functions in the normal range but I'm also symptom free. I know there's controversy surrounding urso making the functions look good but still damaging the liver, however not in my case. I get an MRI every year and ultrasounds every 2 months in between MRIs and results have not shown any worsening. I get blood work done every 2 months and at the same time my doctor checks for tumors and so far so good (I live in Korea where health care is heavily subsidised, there's no wait and doctors are very thorough; I'm very lucky). I also find diet helps keep me feeling well.
My daughter has small duct PSC and is taking urso. It has brought her enzymes to normal levels except for ALP and GGT which are still slightly elevated but much improved. The studies show that at appropriate levels (10- 15mg/kg) the usro will have a positive effect and will long term dramatically reduce the chances of dysplasia and cancer in the biliary tree/colon and may reduce the risk of colonic neoplasia. However, Higher levels can worsen the disease (Lindor study). There is a multi-hospital clinical study on children right now to see the effect on the progression of the disease. We just started our dautghter on the Cox/Stanford protocol of vancomycin in addition to the urso and will keep you posted on how she does. Dr Cox is presenting his study this week at the NASPGHAN conference. His early stage patients (pediatric) have all responded well to the vanco when pre-sclerosis. .I have done a lot of research on PSC and PSC-UC, which is believed to be a different disease from UC and am happy to share what I know with anyone who would like me to.
My son used to take that and didn’t work. We still haven’t found a medicine that works him.
It does work for me and without it I seem to have more symptoms! I just take a smaller dose than my doctor actually told me to go on as the negative reviews about it worry me a little
I have taken ursodiol successfully for about 5 years now. Sometimes my liver function test readings are high, but usually due to other stresses - blocked bile duct, stress from a surgery (breast cancer a year ago), and things like that. But generally my alk phos and others stay at lower (though above normal) levels. I've never noticed any other symptoms from the urso either. I've always been prescribed the normal, and not the high, dose for my weight. High levels of urso are not recommended anymore.
As for Vancomycin, it was noted that taking the antibiotic made other changes in the blood which improved PSC symptoms and even, they are hoping, outcome. So, it is given NOT as the antibiotic it is, but for these other helpful chemistry changes. You can research this. I've read about it on ■■■■■■■■■■■■■■■■■■■■■■■■■■■.
Thanks, everyone, for the informative responses to my questions!
I am at the Mayo Clinic, Rochester, getting a second opinion on my small duct type PSC. Here, I have learned an interesting fact about Urso. If you take it with Cholestyramine Packets (for itching, cholesterol, and/or diarrhea), the Urso won't work at all. It is a bile salt and is bound by the Cholestyramine and carried out of your body in the stools. The hepatologist here says the Urso should be taken at least an hour before the Cholestyramine. I wonder if some of you whom had no response to the Urso, may have been taking it with the Cholestyramine?
We keep learning!
EAD3
Dr. Keith Lindor, who I referred to in my comment, was at Mayo until a few months ago. He is now in AZ as Dean of the new Mayo/ASU medical school. Mayo has a lot of highly qualified docs - you are in good hands.
Thanks, Cactusgirl, that is good to hear!
EAD3
Cactusgirl said:
Dr. Keith Lindor, who I referred to in my comment, was at Mayo until a few months ago. He is now in AZ as Dean of the new Mayo/ASU medical school. Mayo has a lot of highly qualified docs - you are in good hands.
Here is a just published article on vancomycin treatment for children.
111-CoxarticleonVancoOct2012.pdf (391 KB)Hi,
I've been on a combination of Zifaxan and Ursodiol since I was diagnosed about 1 and 1/2 years ago, and my liver enzymes and symptoms are much better now. Good Luck, and let me know how it's going.
Have any of you had unpleasant side effects with Ursodiol? I'm just ready to start it this week and as with most meds, there's a kingsize list of every possible side effect imaginable. Amongst the more common ones are GI upset and hair loss. (I've already got the latter from Imuran!) Any particular probs noted?
I felt a bit loopy and dizzy for the first few days. After my body adjusted to the meds I felt fine. The only thing I get is a metallic taste in my mouth if I take the pills without food.
I have been on Urso for about two weeks and have noticed very few if any side effects. My doctor said that it is a bile acid that is normally made by the body and, in proper dosages, the side effects are minimal.
Alix said:
Have any of you had unpleasant side effects with Ursodiol? I'm just ready to start it this week and as with most meds, there's a kingsize list of every possible side effect imaginable. Amongst the more common ones are GI upset and hair loss. (I've already got the latter from Imuran!) Any particular probs noted?
My doctor just told me to stop taking it. There have been recent studies that it does nothing to help with PCS.
I am waiting to see if I feel any different since stopping the Urso.
Good luck!
My son's doctor just told him last week to stop taking it also. Basically said the same thing about recent studies. He said unless he was itching that it wouldn't help anything but that it would mask the numbers of his blood work. So for the next 3 months he will be off it and get a blood test every month to check his numbers. I'm still very concerned about the gut pain my son gets on and off. He takes Prilosec and that seems to help.
Ursodiol is supposed to act as a bile thinner and if a sludgy, thick bile is contributing to obstruction from CBD stricture, would it not be helpful in that regard? Every flareup/attack leaves further scarring/sclerosing so I'm hoping the ursodiol will lessen the chances of obstructing (one can hope...). Starting it tonight, hopefully no side effects!