When my husband was first diagnosed with PSC he was placed on ursodial- 1 capsule 3x's daily. It seemed to really help because his enzymes went down to almost normal. Last Tuesday we saw his doctor and he told us in the last year studies have shown ursodial really does not help with the progression of the disease so he took him off of it.
Anybody else have this happen?
Lisa
Dear Lisa,
Thank you for posting this question. I have read online where they had done research on ursodial and it was not that beneficial and I have also been told by someone that they don't know why my daughter is on ursodial because it won't really help, but I have never heard of a doctor taking someone off it. I would be interested to see what others have to say.
Did the doctor put him on anything else?
Take care for now.
Kind regards,
PrincessD's Mum
I was on Ursodial for about a year and it didnt help me. I was taken off it by a different consultant who told me the same thing, and I was prescribed Pentasa instead.
I've been taking Pentasa for the past 6 months and it's amazing how well I am on it, specifically with digestion problems and pain after eating. Not had any side effects so far either ~ touch wood. The transformation was almost immediate. I am able to eat stuff again I've avoided for years.
May not apply to everyone with PSC but really helps me.
I have been taking Ursodiol for 5 months now. I have noticed some white bumps on my ankles and legs that a nurse practitioner has suggested may be salt building up in my skin. I am no less itchy than before. Probably more itchy. My GI doc is the one who prescribed it for me. My Hepatologist told me that he had no problem with me staying on it, but he probably would not have put me on it. I currently take it 3 times per day. I will be talking about it with my GI doc to see if possibly reducing dose may help get rid of the bumps on my legs. I’m glad to see this discussion here. Does anyone else notice the white bumps that I do?
I have been taking urso for nearly 3 years now and it helps my liver function appear normal but if I forget to take some my results jump straight back up. I have asked my doctor about coming off them after reading such studies but my doctor said that there wasnt enough evidence to stop taking it as the studies were few and far between.
I been taking ursodial for about 4years now and I heard it does no good.I was taking 1200MG a day and it cost so much so I gradually cut back with the permission of my doctors and now I just take 300MG Capsule a day.I started taking Turmeric Curcumin of 1000MG a day and I heard the Turmeric does help with PSC.My liver enzymes are perfect.
He is the site telling about it.
http://www.sciencedaily.com/releases/2010/03/100323212150.htm
I was diagnosed with PSC 15 years ago and have been on Urso ever since, with good results. When I went to my doc at the Mayo earlier this year, he said their study just concluded that Urso has no effect on PSC ...and if fact negative effects in many cases ,so they actually stopped the study! But he said the conundrum with people like me is that I'm doing just fine with it .... so he said just keep taking it for now.
Maybe a placebo effect? Whatever, it ain't broke so I'm not going to try to fix it ...at least for now!
I'm on 250 mg 3x a day, have read that studies show ursodiol does not help slow the progression of PSC. However, I do have a thick sludgey bile which does not do well finding its way through scarred, stenotic bile ducts. If the ursodiol is thinning the bile such that there are fewer obstructive episodes (which sometimes end up with hospitalization), I feel I'm better on it than off. To what degree it's preventing obstructions... I know not... and would have to go off it to find out, but at this point, having no side effects from the drug, would rather stick with it.
Urso is a scam. It’s derived from bear bile and has caused a black market frenzy. Now there are laws against selling bear organs in many states.
Bear bile is indeed a black market item sadly. Ursodiol is produced synthetically in labs, I checked into this carefully before starting the medication.
Yes, my daughter's liver specialist informed me that Ursodiol was synthetically produced as well.
PrincessD-No our doctor didn't put my husband on anything else. I didn't realize there was anything else out there for PSC.
Stay Calm and Breathe-I have never heard of Pentasa-can you give my some info on it.
Thanks for the info about the Turmeric smileymark2000
I had also heard the ursodial didn't really slow the progression of the disease but I guess I looked at it like this-it is suppose to help lubricate the bile ducts to help the bile drain better so even if it doesn't change the progression of the disease it should help prevent injury to the liver; but what do I know. :/
I know he really didn't like taking it though. Made him pretty urpy. We do repeat blood work in 1 month so it will be interesting to see what they show.
Thanks for all the replies/discussion.
Lisa
Yes that Ursodiol has metal taste to you take it awhile and the taste goes away.
I guess the bile ducts get inflamed and that causes scared tissue which makes the ducts smaller.The Turmeric is good to stop inflammation.
I am also interested in Pentasa. I am the support person for my friend who has PSC and is awaiting transplant. She's been on ursodiol for years and was just planning to ask her G.I. about it.
Pentasa's active ingredient is Mesalazine.
The leaflet that comes with it says it has a healing effect upon the inflammation (swelling, redness, pain) caused by conditions such as Ulcerative Coltis.
It states that the slow release of this mesalazine acts locally to help reduce this inflammation, and reduce or eliminate painful symptoms - and that the uses are for the treatment of mild to moderate attcks of ulcerative colitis and to help maintain freedom from further attacks.
My husband was on it for about 6 mo. to a year. His dr. (A research gastroenterologist for liver disease) told him about the research and that it pretty much was his choice if he took it or not but they were finding better benefits for PBC than PSC and that the research was showing that it was lowering the enzymes but not effecting the bile ducts so much. When he began getting this white bumps all over his body, he decided he was done with it, went off of it and the bumps went away. I have heard from 2 different resources about the turmeric that smileymark2000 (see below) talks about. I am going to look into that more. Thanks, smiley.
I was put on URSOFALK by my first specialist, a Gastroentrologist. Initially, it seemed to help. But eventually my LFTs went up. I was referred onto a hepatologist. He said there was no point in me taking the URSOFALK. Since then I have been getting annual ERCP procedures to stretch my ducts. I am also on Imuran.
I think I am very slowly getting worse and sometimes wonder if I would be better taking the URSOFALK, as I felt better when I did (I was lucky and had absolutely no side effects). But I realise it is also the condition’s natural progression, so it is hard to know if URSOFALK really helped at all.
Lisa,
All I can say is that I've been taking Ursodiol (3 capsules 300 mg daily) since my initial diagnosis about 3 1/2 years ago, and my billirubin and enzyme levels have been within normal range ever since. I am currently asymptomatic (thankfully). At the time of my diagnosis I was taking large doses of statins and estrogen replacement therapy as well, which I've stopped. I was 44 years old at the time. My feeling is if the medication isn't doing any harm and his enzymes were improving, why stop taking it? It sounds like this physician had a knee jerk reaction to recent studies. I'm also a public health scientist and I know no one study can give perfect answers, especially for a disease with so many unknown variables and individual responses to treatment as PSC. Get a second opinion, and make sure the prescription is within the recommended dosage for your husband's body weight. With a rare condition such as this, the patient should do what works for him whenever possible. Good luck.
Colleen
I totally agree with you Colleen. My husband had his stent removed almost 2 weeks ago and he is getting tired again and turning yellow. I know there is no way it is because his main bile duct is closing off again; I think it is because of the little bile ducts. When he was first diagnosed those were narrowed. So here is my thoughts "he is turning yellow because he doesn't have anything to help drain that bile from the little bile ducts. If the ursodial helps with that and helps his symptoms who cares what it does to the progression of the disease. We know how it is going to progress regardless". I just don't know. Roller coaster is an understatement when it comes to this disease!
Lisa
Colleen Kaelin said:
Lisa,
All I can say is that I've been taking Ursodiol (3 capsules 300 mg daily) since my initial diagnosis about 3 1/2 years ago, and my billirubin and enzyme levels have been within normal range ever since. I am currently asymptomatic (thankfully). At the time of my diagnosis I was taking large doses of statins and estrogen replacement therapy as well, which I've stopped. I was 44 years old at the time. My feeling is if the medication isn't doing any harm and his enzymes were improving, why stop taking it? It sounds like this physician had a knee jerk reaction to recent studies. I'm also a public health scientist and I know no one study can give perfect answers, especially for a disease with so many unknown variables and individual responses to treatment as PSC. Get a second opinion, and make sure the prescription is within the recommended dosage for your husband's body weight. With a rare condition such as this, the patient should do what works for him whenever possible. Good luck.
Colleen
I have been taking Urso 2000 mg daily for about 4 years now. I had been symptom free for the most part until they decided to cut back my dosage. After that I developed horrible itching and my bili levels jumped up for the first time. I went back on my 2000 mg daily and no more itching. This is not a one size fits all disease. Staying on my Urso!