It's very interesting reading your messages and similar symptoms - Thank you for the support. I was diagnosed in January after turning super-orange within 24 hours, my duct was packed full of gunk and stones, but since it has turned out that I have PSC... Could be worse right?
So I went to see a Hepatologist today at UW Medical Center in Seattle. The Doc was against the use of Ursodiol for PSC. However my GI has me taking it 2 x per day. (My Gallbladder was removed in February during open surgery).
Any of you guys taking it or heard of it? Hear anyone suggest that they're for or against it?
I donāt really have much to offer other than Iām in a similar boat. GI prescribed me Urso, by my hepatologist from the Mayo clinic is having me not take it. However, I do have my gallbladder yet. Interested to hear what others have to say on this topic:)
I have been on 2000mgs of Urso for pretty much 12 years, and have no problems from it. I had PSC for several years before my diagnosis, so they figure I have had it nearly 20 years now. I am still not ill enough to be considered for the transplant list, and my liver enzymes are far lower than they were without the Urso. I know there is an argument that the drug simply masks the true progression of the disease, but my view on that is if you are having your CTScans regularly, full bloodwork panels, and working hand in hand with your gastro, you can tell and see the actual progression of the disease. My med list is long - the last year has been the worst as far as symptoms and new ailments since I was diagnosed. But, I am still here!!! I don't know if that has anything to do with Urso, but it has been a part of my meds since day one.
Straight from a regional liver disease conference for specialists - transplant docs, hepatologists etc. I believe it was last summer. Told to me by Doc. Marcelo Kugelmas of South Denver GI practice. The most recent studies of Urso show that it seems to be helpful in slowing the disease progression of PBC - primary biliary cirrhosis. BUT it is looking like it is harmful and may even accelerate the PSC. Recommendation - do not take.
Urso is a synthetic bile thinner. It does not slow or work on the mechanism that causes PSC or destroys the bile ducts. It is given to thin your bile w/ the hope that you don't get sludged up.
I've refused to take it from 1993 because they could not show then or now that it slows the progression of the disease. My most recent attempts of both the generic and brand gave me severe headaches and flu like symptoms.
I was on it for several years and my liver dr told me it causes cancer so he took me off it. I have been off it about 2 years. I am also on the transplant list. My MELD score in low. My liver numbers have always been "stable but high" with or without urso. I truely believe diet has a big role in this disease. i was diagnosed about 20 years ago when i had my gallbladder removed. They told me i would need a transplant in 5-7 years, and told me there was nothing i could do to prevent it. hmmm
I have been diagnosed with PSC for 5 years now and I have been taking Ursodiol since I was diagnosed. I take 3 pills 3 times a day. My doctor has increase my dosage over the years but it seems to help me. I have tried several other medications but none of them have worked for me as good as Urso.
I have had my gallbladder removed since I was diagnosed with PSC.
My hepatologist has not said anything bad about Urso and my Gi doctor is the one who prescribed it.
I am for Urso but everyones body responds to things in a different way.
I take it and have for about 6 years. Works fine for me. No side effects. Others have their own opinions about it. The high doses are proven not to be helpful. Trust your own gut, Nathan, and the doc that you trust and know. And ask questions. Like why?That's a great question! Drives parents crazy - and doctors, too!!! hahahaha
Hi all, I took Ursolet for 5 years, until I went into portal hypertension when 12 weeks pregnant. I went off it then as my hepatologist (here in London, sr prof at leading liver transplant hospital) produced several research studies indicating it shows a āfalseā positive on reducing liver function tests but transplantation and cancer cases increase. Apparently there is also some indication it may cause bleeding as in case of portal hypertension.
I have been seeing a naturopath who has given me acupuncture and changed my diet, which seems to be working.
When taking any medication it may be useful to keep in mind who ultimately profits, and then weigh the side effects and effectiveness.
Good luck! And donāt be afraid to get a variety of different opinions, or to leave the prescriptions behind, at least as an experiment.
I ve been taking Urso for 4 months but have been Diagnoised over a year ago my specialist in Vancouver Canada told me this ,,,,Urso thins the bile to keep it moving so it won't sit there stuck in your bile ducts promoting the risk of cancer,,it does not slow the procression of the diease or treats it cause ,,and we are not sure what causes it yet,,but there are some therioes out there,, one being that a germ gets into the bile duct from our stomach and runs a mouk ,,,, the best i can say is do what you are comfortable with talk talk talk with all your doctors be informed,,, ask questions,,, and be as healthly and happy as you can,,,
Thank you to all of you for your input. Appears that there are lots of mixed messages out there between doctors. My GI prescribed it at 2 x 300mg per day which is considered a low dose. I emailed the Hepatologist following my appointment to get further clarification and below is his response:
Nathan,
I favor using urso at your current (fairly low) dose. Mainly because you have colitis. It does have the potential benefit to prevent colon cancer. If you donāt have colitis, we usually would not use it. The risk associated with the medicine is mainly with āhigherādoses.
Take care.
BTW: Greatdane61.... 39 ERCP's? WOW. I have my 6th on the 30th. (Over the course of 5 months)
I'm so glad you brought this up.. as I was going to start a posting on this on Tuesday after my colonoscopy. I also had my gallbladder removed back on Nov 21, 2011. I was diagnosed w/ PSC 6 weeks ago. Along with that diagnosis I was issued a prescription of Ursodiol to take 3 times a day with meals. I got my prescription & took it as prescribed I stop reading side effects on medications because I would have more anxiety thinking am I going to get the sided effect or not... Just another thing to worry about.. Well as I took it ... certain things started happening... first I developed a cough, for which I thought maybe I was conjested because the cough was productive I was coughing up fleem which was clear. Then when I blew my nose my what came out was slightly yellow.. So I took some Musinex D & did my Neety Pot sinus cleansing which did help & there was no more yellow snot. Sorry to be so blunt.
Well I went to my first clinical visit w/ my GI doctor (Dr. Dale Holly) after my release from the hospital, At that time my cough was very here & there so I didn't say anything about it.. I did a lab test & left, for which 2 days later they called me told my enzymes levels were high for me to come in do another Lab. After that about a week later I started seeing read patchy type rash that was on my chest , abdomen, back & inner thigh near my knew. I then pulled up Ursodiol on the internet & low an behold, it said the side effects could cause a cough, & maybe a rash if so contact your physician. I did call him I ended up talking with the MA that afternoon as we went over my diet, & any medications or supplements I may have been taking. At the same time I looked at the rash it was fading away a little but not completely gone .. so it was crazy situation. As of that day I still continued to take Ursodiol 3x day w/ food.
Well when I went in for my colonoscopy , I believe while I was under my doctor notice the rash ., when I came too after the colonoscopy he said "I'm taking you off the Ursodiol & when you leave here go by his office to do another lab".
So my take on it Urso was doing nothing for me, if my numbers were still high. Since I have been off of the medication the rash looks like it subsiding some, but also when I get upset or stress I look & it looks like its coming back.. So I am confused as hell right now.. But I do keep a daily journal on things that I do, how I feel, & especially my sleep patterns which are all over the board. Sometimes I feel like I'm on speed that has no speed.. You can't sleep , you tired, but you can't fall asleep .. So you sit there wide eyed looking around like an owl..
From what I had read on this board that Urso does more harm than good for PSC patients, however I discounted that because I feel we all are different & some treatments may work for some and not others. So I rolled with it thinking it was making me better, to only realize it was doing nothing.
It seem like I keep reading this about PSC not just here on other blog posting where people had their Gallbladder removed , then after that everything just goes downhill from there... I had my gallbladder removed in November, then my symptoms returned in December , the sleep disorder, bloating, when I ate something I would start cramping or get just sick, fatigue, then in Jan 2012 I would get these fevers of 102 .. out of the blew it scared me I took tylenol for it & the fever went down, I figured it was just an offset of my gallbladder surgery.. But what was really happening my symptoms for PSC actually started progressing along simultaneously or right after the gallbladder surgery.
Even though my doctor assured me that me having my gallbladder removed has nothing to do with my condition. As its a pre-disposed genetic condition that I have had all my life & these symptoms could have presented itself 10 yr or 15years ago...
As for Urso I am going to agree with a lot of people who have posted on this board that it does more harm than good for PSC patients, I just wished I had known he was going to take me off the Urso because I just refilled the order a week before he took me off.. Money down the drain.. huh?
Crixus
cathroy said:
I was on it for several years and my liver dr told me it causes cancer so he took me off it. I have been off it about 2 years. I am also on the transplant list. My MELD score in low. My liver numbers have always been "stable but high" with or without urso. I truely believe diet has a big role in this disease. i was diagnosed about 20 years ago when i had my gallbladder removed. They told me i would need a transplant in 5-7 years, and told me there was nothing i could do to prevent it. hmmm
I ve been taking Urso for 4 months but have been Diagnoised over a year ago my specialist in Vancouver Canada told me this ,,,,Urso thins the bile to keep it moving so it won't sit there stuck in your bile ducts promoting the risk of cancer,,it does not slow the procression of the diease or treats it cause ,,and we are not sure what causes it yet,,but there are some therioes out there,, one being that a germ gets into the bile duct from our stomach and runs a mouk ,,,, the best i can say is do what you are comfortable with talk talk talk with all your doctors be informed,,, ask questions,,, and be as healthly and happy as you can,,,
My teenage son has PSC, he refuses to take his Ursodiol claiming it makes him feel sick and gives him headaches. He has been focusing on his diet and using his natural instincts, which seem to be helping his lab results as well as his symptoms.
I can talk about the sleep stuff. I have the same symptoms that you describe, but I also can't sleep more than about 6 hours a day, not enough for a sick person. (I used to sleep 10-12.) I went to see my hep this week and after a long discussion she said she thinks I have early stages of hepatic encephalopathy (HE) - sleep disturbance. She prescribed Xifaxan for me which works very well for quelling HE and keeping down recurrences. However, it is a very, very expensive drug and my insurance co. is still deciding whether or not and at what price I should get it. Retail cost is $1393/mo. Crazy, huh? No generic, of course. They aren't even allowed to sell it outside the US. Such bullshit. Anyway, ask your doctor (I guess) about the HE and sleep disturbance. It is definitely coming from the PSC - common problem. She prescribed Restoril (temazepam) and 15 mg wasn't giving me more than 6 hours. She told me to take 30 mg and I did that last night and slept 9 glorious hours!!!
You can drink a lot more water to try to move the urso out of your system. Look it up online again and find out how long the half-life is. That will tell you (times 2) how long it will take your body to be rid of it. Good luck to you, C.
Dana
Crixus said:
I'm so glad you brought this up.. as I was going to start a posting on this on Tuesday after my colonoscopy. I also had my gallbladder removed back on Nov 21, 2011. I was diagnosed w/ PSC 6 weeks ago. Along with that diagnosis I was issued a prescription of Ursodiol to take 3 times a day with meals. I got my prescription & took it as prescribed I stop reading side effects on medications because I would have more anxiety thinking am I going to get the sided effect or not... Just another thing to worry about.. Well as I took it ... certain things started happening... first I developed a cough, for which I thought maybe I was conjested because the cough was productive I was coughing up fleem which was clear. Then when I blew my nose my what came out was slightly yellow.. So I took some Musinex D & did my Neety Pot sinus cleansing which did help & there was no more yellow snot. Sorry to be so blunt.
Well I went to my first clinical visit w/ my GI doctor (Dr. Dale Holly) after my release from the hospital, At that time my cough was very here & there so I didn't say anything about it.. I did a lab test & left, for which 2 days later they called me told my enzymes levels were high for me to come in do another Lab. After that about a week later I started seeing read patchy type rash that was on my chest , abdomen, back & inner thigh near my knew. I then pulled up Ursodiol on the internet & low an behold, it said the side effects could cause a cough, & maybe a rash if so contact your physician. I did call him I ended up talking with the MA that afternoon as we went over my diet, & any medications or supplements I may have been taking. At the same time I looked at the rash it was fading away a little but not completely gone .. so it was crazy situation. As of that day I still continued to take Ursodiol 3x day w/ food.
Well when I went in for my colonoscopy , I believe while I was under my doctor notice the rash ., when I came too after the colonoscopy he said "I'm taking you off the Ursodiol & when you leave here go by his office to do another lab".
So my take on it Urso was doing nothing for me, if my numbers were still high. Since I have been off of the medication the rash looks like it subsiding some, but also when I get upset or stress I look & it looks like its coming back.. So I am confused as hell right now.. But I do keep a daily journal on things that I do, how I feel, & especially my sleep patterns which are all over the board. Sometimes I feel like I'm on speed that has no speed.. You can't sleep , you tired, but you can't fall asleep .. So you sit there wide eyed looking around like an owl..
From what I had read on this board that Urso does more harm than good for PSC patients, however I discounted that because I feel we all are different & some treatments may work for some and not others. So I rolled with it thinking it was making me better, to only realize it was doing nothing.
Yes 39 erp's - 40 in 2 weeks. I had 24 with first liver. Part of that time I was in Bellingham. I was first diagnosed at Virg. Mason and then UW. Both docs have moved on. And I moved to Denver. Then after 8 rejections and several ERCPs' rediagnosed and now 14 more and well on my way to 50. I do best w/ a regular 3 month ERCP for stretching and stenting. Keeps my quality of life at peak. So I found a very competent, efficient GI practice w/ docs who keep up on the latest trends and don't have students chasing their coats.
Anaconate said:
Thank you to all of you for your input. Appears that there are lots of mixed messages out there between doctors. My GI prescribed it at 2 x 300mg per day which is considered a low dose. I emailed the Hepatologist following my appointment to get further clarification and below is his response:
Nathan,
I favor using urso at your current (fairly low) dose. Mainly because you have colitis. It does have the potential benefit to prevent colon cancer. If you donāt have colitis, we usually would not use it. The risk associated with the medicine is mainly with āhigherādoses.
Take care.
BTW: Greatdane61.... 39 ERCP's? WOW. I have my 6th on the 30th. (Over the course of 5 months)
thank you for such good advice, I only have a GI doctor I report to for right now.. I have not been to a doctor for HE(hepatic encephalopathy) ugggg just more stuff on top of this PSC . I am trying to stay strong & since being off the Urso I have been drinking a lot of water. Doing a lot of urinating too.. I have to hydrate ,hydrate, & more hydrate. I am going to look up see how long Urso stays in your system.. Wow I can't believe these pharma prices for medication $1393/mo... REALLY who has that type of money just freely to pay for meds.. that just don't make any sense. Just ripping off sick people making profits off another persons sickness.. it's disgusting.
danabee said:
Crixus,
I can talk about the sleep stuff. I have the same symptoms that you describe, but I also can't sleep more than about 6 hours a day, not enough for a sick person. (I used to sleep 10-12.) I went to see my hep this week and after a long discussion she said she thinks I have early stages of hepatic encephalopathy (HE) - sleep disturbance. She prescribed Xifaxan for me which works very well for quelling HE and keeping down recurrences. However, it is a very, very expensive drug and my insurance co. is still deciding whether or not and at what price I should get it. Retail cost is $1393/mo. Crazy, huh? No generic, of course. They aren't even allowed to sell it outside the US. Such bullshit. Anyway, ask your doctor (I guess) about the HE and sleep disturbance. It is definitely coming from the PSC - common problem. She prescribed Restoril (temazepam) and 15 mg wasn't giving me more than 6 hours. She told me to take 30 mg and I did that last night and slept 9 glorious hours!!!
You can drink a lot more water to try to move the urso out of your system. Look it up online again and find out how long the half-life is. That will tell you (times 2) how long it will take your body to be rid of it. Good luck to you, C.
Dana
Crixus said:
I'm so glad you brought this up.. as I was going to start a posting on this on Tuesday after my colonoscopy. I also had my gallbladder removed back on Nov 21, 2011. I was diagnosed w/ PSC 6 weeks ago. Along with that diagnosis I was issued a prescription of Ursodiol to take 3 times a day with meals. I got my prescription & took it as prescribed I stop reading side effects on medications because I would have more anxiety thinking am I going to get the sided effect or not... Just another thing to worry about.. Well as I took it ... certain things started happening... first I developed a cough, for which I thought maybe I was conjested because the cough was productive I was coughing up fleem which was clear. Then when I blew my nose my what came out was slightly yellow.. So I took some Musinex D & did my Neety Pot sinus cleansing which did help & there was no more yellow snot. Sorry to be so blunt.
Well I went to my first clinical visit w/ my GI doctor (Dr. Dale Holly) after my release from the hospital, At that time my cough was very here & there so I didn't say anything about it.. I did a lab test & left, for which 2 days later they called me told my enzymes levels were high for me to come in do another Lab. After that about a week later I started seeing read patchy type rash that was on my chest , abdomen, back & inner thigh near my knew. I then pulled up Ursodiol on the internet & low an behold, it said the side effects could cause a cough, & maybe a rash if so contact your physician. I did call him I ended up talking with the MA that afternoon as we went over my diet, & any medications or supplements I may have been taking. At the same time I looked at the rash it was fading away a little but not completely gone .. so it was crazy situation. As of that day I still continued to take Ursodiol 3x day w/ food.
Well when I went in for my colonoscopy , I believe while I was under my doctor notice the rash ., when I came too after the colonoscopy he said "I'm taking you off the Ursodiol & when you leave here go by his office to do another lab".
So my take on it Urso was doing nothing for me, if my numbers were still high. Since I have been off of the medication the rash looks like it subsiding some, but also when I get upset or stress I look & it looks like its coming back.. So I am confused as hell right now.. But I do keep a daily journal on things that I do, how I feel, & especially my sleep patterns which are all over the board. Sometimes I feel like I'm on speed that has no speed.. You can't sleep , you tired, but you can't fall asleep .. So you sit there wide eyed looking around like an owl..
From what I had read on this board that Urso does more harm than good for PSC patients, however I discounted that because I feel we all are different & some treatments may work for some and not others. So I rolled with it thinking it was making me better, to only realize it was doing nothing.
Crixus, I looked up how ursodiol is eliminated and found this (it's still a good idea to drink lots of water):
Elimination: Primarily fecal; very small amounts are excreted into urine. Small amount of unabsorbed ursodiol passes into the colon where it undergoes bacterial degradation (7-dehydroxylation); the resulting lithocholic acid is partly absorbed from the colon but is sulfated in the liver and rapidly eliminated in the feces {02}{05} as the sulfolithocholyl glycine or sulfolithocholyl taurine conjugate. {01}{04}{20}{52}
Are you taking Lactulose? Anyway, make sure you're not getting constipated. Sorry to be so ... out there. It is what it is and PSC patients are always having to talk about their poop!
I don't know with Lactulose is? so I am not on it.. I don't have any issue w/ constipation, I don't know what's worse being stopped up .. or having to run the the bathroom to poop all the time... But since I have been off the medicine, I don't feel bad or anything I am staying hydrated...
Lactulose is basically a stool softener. However, it does bind the offending ammonia that otherwise migrates to the brain and causes HE. Even if you're pooping a lot, you still may not be moving out the ammonia. Ask your doc. It's a standard medicine for PSCers. I don't like taking the syrup version, but if you can afford the extra cost (it's not much), get the Kristalose version - little packets of powder to stir in water and drink. I prefer it. Just can't always afford it. Any-way.
Dana
Crixus said:
hey Danabee,
I don't know with Lactulose is? so I am not on it.. I don't have any issue w/ constipation, I don't know what's worse being stopped up .. or having to run the the bathroom to poop all the time... But since I have been off the medicine, I don't feel bad or anything I am staying hydrated...