My teenage son has just been put on urso (250mg x2 a day) -early stage PSC, and I feel concerned that a lot of studies into its effectiveness show little benefit and at times can have a very negative effect on the progression of PSC/incidence of liver cancer.He is also on azathioprine and so far shows no symptoms of PSC but has some progression of scarring on main bile duct.I would appreciate any feedback on your experiences with this drug -short/long term results,beneficial or not.
We had to take our teenage daughter off of it, funny blood results, and found no difference from when she was on it. She’s on Apriso only right now. It’s hard because most people believe it doesn’t do anything to stop the progression. But some dr believe it does. God knows we will try anything for our kids
Thanks for your reply Jen - Yes , I wonder how effective it is, will watch our teenage son's blood results closely
Never heard of Apriso -is it a new treatment? What does it do? Have you heard about nor-Urso currently being trialed for PSC in Vienna with great results (but in 2nd stage trial so still 5+ years til public release)
Jen said:
We had to take our teenage daughter off of it, funny blood results, and found no difference from when she was on it. She's on Apriso only right now. It's hard because most people believe it doesn't do anything to stop the progression. But some dr believe it does. God knows we will try anything for our kids
SMick - Can't offer any experience, as we're new to all of this. We have decided against urso for now. Our son started it on it right after one of his MRIs (the one where you drink a ton of stuff first). He was very sick for about three days following the procedure/urso start - we didn't know which was the culprit, but given the ambivalent results with urso, we decided to stop for the time being, especially since he was getting an ERCP soon.
We're currently trying the Vanco approach. In addition to the published results of the Cox data and the Mayo trial on adults, I have recently heard that there's a pediatric gastro doc in LA who's had positive results with vanco on about a dozen patients (unpublished - word of mouth...). hoping to find some positive results the next time they do an MRI or ERCP...
I need to read more about the norUrso... maybe there's something there?
Wishing the best for your son. Take care,
If you want to know more about the Nor-Urso trials being done in Vienna there is a link to the medical articles written about this somewhere on this website (or you could google Nor-Urso) Its a synthetic bile acid that is in stage 2 trials ending Aug 2014 then will start final trials after. Seem to be cautiously optimistic that this could be a major breakthrough for PSC (even the cure??) How old is your son, mine is 15 and he has been diagnosed with AIH/PSC stage 2 (slight scarring on main bile duct) No symptoms yet and responding well to immune suppressants. How is your son's health? How did you find out he had PSC? Seem to be quite a few teenage boys diagnosed.
mom to psc teen said:
SMick - Can't offer any experience, as we're new to all of this. We have decided against urso for now. Our son started it on it right after one of his MRIs (the one where you drink a ton of stuff first). He was very sick for about three days following the procedure/urso start - we didn't know which was the culprit, but given the ambivalent results with urso, we decided to stop for the time being, especially since he was getting an ERCP soon.
We're currently trying the Vanco approach. In addition to the published results of the Cox data and the Mayo trial on adults, I have recently heard that there's a pediatric gastro doc in LA who's had positive results with vanco on about a dozen patients (unpublished - word of mouth...). hoping to find some positive results the next time they do an MRI or ERCP...
I need to read more about the norUrso... maybe there's something there?
Wishing the best for your son. Take care,
I think my son's PSC is more progressed than your son's. My son has had recurring digestive distress for about a year. The pediatrician had ruled out celiac and parasite, and then he got better. But he kept having these episodes - having gone from being a kid who never got sick. As in never missed a day of school during his entire elementary years. I finally got fed up and took him to the ER after one of his episodes of what looked like stomach flu. They did blood tests and discovered the elevated liver enzymes. From there is went pretty quickly (we live in a big city and he was at a pediatric hospital with a very good GI/Hep department). Blood work, ultrasound, endoscopy&colonoscopy,MRI,ERCP.
He's definitely better in terms of not being violently ill. But now he's got low-level stuff going on which I blame on the prednisone... How was your son diagnosed? It is such a bizarre illness - I'm reading the book about Chris Klug and while he was waiting for a transplant, he was well enough to want to go surfing. Crazy! My son is a bit like that (not an olympian!) - he's a competitive swimmer and can spend four hours a day doing serious training. It is hard to look at him and believe there really is anything wrong...
How did your son get diagnosed if he has no symptoms? I, of course, am wishing we had caught it earlier... we had signs there was something wrong for at least a year. Sigh.
SMick said:
If you want to know more about the Nor-Urso trials being done in Vienna there is a link to the medical articles written about this somewhere on this website (or you could google Nor-Urso) Its a synthetic bile acid that is in stage 2 trials ending Aug 2014 then will start final trials after. Seem to be cautiously optimistic that this could be a major breakthrough for PSC (even the cure??) How old is your son, mine is 15 and he has been diagnosed with AIH/PSC stage 2 (slight scarring on main bile duct) No symptoms yet and responding well to immune suppressants. How is your son's health? How did you find out he had PSC? Seem to be quite a few teenage boys diagnosed.
mom to psc teen said:SMick - Can't offer any experience, as we're new to all of this. We have decided against urso for now. Our son started it on it right after one of his MRIs (the one where you drink a ton of stuff first). He was very sick for about three days following the procedure/urso start - we didn't know which was the culprit, but given the ambivalent results with urso, we decided to stop for the time being, especially since he was getting an ERCP soon.
We're currently trying the Vanco approach. In addition to the published results of the Cox data and the Mayo trial on adults, I have recently heard that there's a pediatric gastro doc in LA who's had positive results with vanco on about a dozen patients (unpublished - word of mouth...). hoping to find some positive results the next time they do an MRI or ERCP...
I need to read more about the norUrso... maybe there's something there?
Wishing the best for your son. Take care,
We picked up my son's PSC/AIH overlap syndrome when he had elevated liver enzymes while taking methotrexate for juvenile arthritis about 2 yrs ago. He is like your son - never been sick in his life,very active,sporty and appears to have no health issues at all which I think puts us all in a state of denial until something serious happens healthwise. We have been very lucky so far not to have any digestive issues/other symptoms so far. He is also on prednisolone, cortisone and now Urso and is going in for 1st ERCP to stretch scarring in main bile duct. I have also read Chris Klug's book (1st thing I did on diagnosis after reading all the grim stuff just to give me hope) - he is inspirational and shows how such a healthy person can so suddenly be affected by this disease. Seems to be active young males-not fair.I am also keen to follow up the Vancomycin treatment and then hopefully Nor-Urso when available - anything that is going to slow down or hopefully stop the progression.Its good to have someone to talk to in the same situation - this website has been a great support as here in Australia, PSC is quite rare.
mom to psc teen said:
I think my son's PSC is more progressed than your son's. My son has had recurring digestive distress for about a year. The pediatrician had ruled out celiac and parasite, and then he got better. But he kept having these episodes - having gone from being a kid who never got sick. As in never missed a day of school during his entire elementary years. I finally got fed up and took him to the ER after one of his episodes of what looked like stomach flu. They did blood tests and discovered the elevated liver enzymes. From there is went pretty quickly (we live in a big city and he was at a pediatric hospital with a very good GI/Hep department). Blood work, ultrasound, endoscopy&colonoscopy,MRI,ERCP.
He's definitely better in terms of not being violently ill. But now he's got low-level stuff going on which I blame on the prednisone... How was your son diagnosed? It is such a bizarre illness - I'm reading the book about Chris Klug and while he was waiting for a transplant, he was well enough to want to go surfing. Crazy! My son is a bit like that (not an olympian!) - he's a competitive swimmer and can spend four hours a day doing serious training. It is hard to look at him and believe there really is anything wrong...
How did your son get diagnosed if he has no symptoms? I, of course, am wishing we had caught it earlier... we had signs there was something wrong for at least a year. Sigh.
SMick said:If you want to know more about the Nor-Urso trials being done in Vienna there is a link to the medical articles written about this somewhere on this website (or you could google Nor-Urso) Its a synthetic bile acid that is in stage 2 trials ending Aug 2014 then will start final trials after. Seem to be cautiously optimistic that this could be a major breakthrough for PSC (even the cure??) How old is your son, mine is 15 and he has been diagnosed with AIH/PSC stage 2 (slight scarring on main bile duct) No symptoms yet and responding well to immune suppressants. How is your son's health? How did you find out he had PSC? Seem to be quite a few teenage boys diagnosed.
mom to psc teen said:SMick - Can't offer any experience, as we're new to all of this. We have decided against urso for now. Our son started it on it right after one of his MRIs (the one where you drink a ton of stuff first). He was very sick for about three days following the procedure/urso start - we didn't know which was the culprit, but given the ambivalent results with urso, we decided to stop for the time being, especially since he was getting an ERCP soon.
We're currently trying the Vanco approach. In addition to the published results of the Cox data and the Mayo trial on adults, I have recently heard that there's a pediatric gastro doc in LA who's had positive results with vanco on about a dozen patients (unpublished - word of mouth...). hoping to find some positive results the next time they do an MRI or ERCP...
I need to read more about the norUrso... maybe there's something there?
Wishing the best for your son. Take care,