Re: High Dose Urso Study

[Guest guest]

My son has had intermittent abdominal, RUQ, substernal and shoulder pain for about 8 years. He is very sensitive to fat (vomits after high fat food) and pain is increased with fat. All along the GI docs have said, maybe some reflux...? Never have they believed it could be related to PSC.

We have focused on looking at ways to relieve the symptoms... for Nexium helps a great deal (whereas Prilosec and omeprazole and Zantac did not help). And yes, fat, carbonated drinks and caffeine makes difference. For many people, avoiding orange juice, chocolate, mints, tomato paste products, spicy food, also helps. I haven't bothered asking "why", just try to make it better. Personally, I believe it has to do with PSC somehow or another.

This summer is working outside (at dog kennel) and he really has noticed that hydration with water helps him feel better. He has the giant thermos jug.

Also... unrelated, but... decreasing caffeine has helped 's sleep pattern be as normal as possible now. And he has had some ugly tooth issues, which make me wish we had stopped carbonated, sugar beverages ages ago. The dentist believes that the UC and PSC and increased acidity have all contributed to tooth decay. GI did not agree.

Joanne H

(, Ca., mom of 18, UC/PSC 2-06; JRA 1998)

Thanks Darcy and ,I will try to make sure that I am drinking enough water while I am at work, and see if that helps. I guess I am going to have to try to give up my caffeine (Mountain Dew) for over night

..

[Guest guest]

My son has had intermittent abdominal, RUQ, substernal and shoulder pain for about 8 years. He is very sensitive to fat (vomits after high fat food) and pain is increased with fat. All along the GI docs have said, maybe some reflux...? Never have they believed it could be related to PSC.

We have focused on looking at ways to relieve the symptoms... for Nexium helps a great deal (whereas Prilosec and omeprazole and Zantac did not help). And yes, fat, carbonated drinks and caffeine makes difference. For many people, avoiding orange juice, chocolate, mints, tomato paste products, spicy food, also helps. I haven't bothered asking "why", just try to make it better. Personally, I believe it has to do with PSC somehow or another.

This summer is working outside (at dog kennel) and he really has noticed that hydration with water helps him feel better. He has the giant thermos jug.

Also... unrelated, but... decreasing caffeine has helped 's sleep pattern be as normal as possible now. And he has had some ugly tooth issues, which make me wish we had stopped carbonated, sugar beverages ages ago. The dentist believes that the UC and PSC and increased acidity have all contributed to tooth decay. GI did not agree.

Joanne H

(, Ca., mom of 18, UC/PSC 2-06; JRA 1998)

Thanks Darcy and ,I will try to make sure that I am drinking enough water while I am at work, and see if that helps. I guess I am going to have to try to give up my caffeine (Mountain Dew) for over night

..

[Guest guest]

Hey all, I know it sounds like I am beating a dead horse, but here goes the question again. You guys have provided excellent feedback, thanks for that and for listening and taking the time to reply. It means soo much. I still do not get what to watch for in bold below.if his liver functions are normal. How will they know if the disease is progressing?. Do we insist on the MRI, X-rays annually?. Do most of you get these tests done even though the blood work -liver are normal? I have learned that we need to advocate for ourselves and our children, so I am just trying to be prepared on what to insist on in July when we visit his Hepatologist who seems to think all is ok as liver functions good....Just do not get how they went from off the charts to good with Urso, obviously something is not ok if they were elevated..that severely months back and we really never want to go thru that again as Tyler was so ill and suffering. One minute they tell me liver tests are ok and days later , they were sky rocketed. This was pre- new Doctor team...

And also what makes up the MELD/PELD score for a 10 year old>>>

thanks in advance all!!!!!!

Stevie Ostos

Stevie Gedgaudas/APPLEVAC/KCDATA

Stevie Gedgaudas/APPLEVAC/KCDATA

06/18/2008 04:55 PM

To

cc

Subject

Re: Re: High Dose Urso Study

Carolyn B., thank you soo much for the additional info. Just when I think I get it all, more info is available on this site which is great. The thing is that my dotors have led me to believe that Tyler is doing great w/the PSC because of his LFT and GGT being normal that they only need to see him once a year. I know the platelets and albumin have changed from time to time and a couple of times they were concerned, but then they stabilized. I just want to know what to watch for. My Tyler is appearing very well as he is on Remicade now for the coliltis and it is in remission and he does not seem to get the liver pains since on Urso. His last ERCP was over a year and a half ago. But, he looks very pale. He still is tired, weak and cannot tolerate the heat outside. Funny. that someone wrote today that they had night terrors from Urso as Tyler is soo afraid to go to bed alone at night. He is afraid of soo many things lately that I wonder if the URso contributes to it but not willing to go off because of the pain he was in before he started it. I just need to be aware of what to watch for with him to know when the PSC is progressing if at all. I do not want to be hit with a rock one day that all of a sudden he is in stage 4. I am not even sure where he is at as far as the stages and I thought I was so well versed. WE are going to see his hepatologist in July so I want to prepared with questions. Also, his next Remicade is scheduled next Wednesday.

Keep me posted on anything and everything, I welcome the info.

You guys are soo very helpful. I hope to meet all of you in Chicago next year

LOL

Stevie.

[Guest guest]

Hey all, I know it sounds like I am beating a dead horse, but here goes the question again. You guys have provided excellent feedback, thanks for that and for listening and taking the time to reply. It means soo much. I still do not get what to watch for in bold below.if his liver functions are normal. How will they know if the disease is progressing?. Do we insist on the MRI, X-rays annually?. Do most of you get these tests done even though the blood work -liver are normal? I have learned that we need to advocate for ourselves and our children, so I am just trying to be prepared on what to insist on in July when we visit his Hepatologist who seems to think all is ok as liver functions good....Just do not get how they went from off the charts to good with Urso, obviously something is not ok if they were elevated..that severely months back and we really never want to go thru that again as Tyler was so ill and suffering. One minute they tell me liver tests are ok and days later , they were sky rocketed. This was pre- new Doctor team...

And also what makes up the MELD/PELD score for a 10 year old>>>

thanks in advance all!!!!!!

Stevie Ostos

Stevie Gedgaudas/APPLEVAC/KCDATA

Stevie Gedgaudas/APPLEVAC/KCDATA

06/18/2008 04:55 PM

To

cc

Subject

Re: Re: High Dose Urso Study

Carolyn B., thank you soo much for the additional info. Just when I think I get it all, more info is available on this site which is great. The thing is that my dotors have led me to believe that Tyler is doing great w/the PSC because of his LFT and GGT being normal that they only need to see him once a year. I know the platelets and albumin have changed from time to time and a couple of times they were concerned, but then they stabilized. I just want to know what to watch for. My Tyler is appearing very well as he is on Remicade now for the coliltis and it is in remission and he does not seem to get the liver pains since on Urso. His last ERCP was over a year and a half ago. But, he looks very pale. He still is tired, weak and cannot tolerate the heat outside. Funny. that someone wrote today that they had night terrors from Urso as Tyler is soo afraid to go to bed alone at night. He is afraid of soo many things lately that I wonder if the URso contributes to it but not willing to go off because of the pain he was in before he started it. I just need to be aware of what to watch for with him to know when the PSC is progressing if at all. I do not want to be hit with a rock one day that all of a sudden he is in stage 4. I am not even sure where he is at as far as the stages and I thought I was so well versed. WE are going to see his hepatologist in July so I want to prepared with questions. Also, his next Remicade is scheduled next Wednesday.

Keep me posted on anything and everything, I welcome the info.

You guys are soo very helpful. I hope to meet all of you in Chicago next year

LOL

Stevie.

[Guest guest]

Hey Stevie,

My hepatologist is a firm believer in treating PSC patients according

to how they feel, rather than completely relying on blood work and

imaging studies. (I was recently feeling very sick, and that

something was not right. I contacted my hep and he ordered an MRCP,

which showed no changes since my last imaging study, and I had some

great blood work. We started by changing some of my meds, but didn't

go in immediately for an ERCP since the MRCP looked good. Within

three weeks of that appointment, though, my LFTs and bilirubin were

through the roof, and I ended up going in for an emergent ERCP--true

to my 'feelings'--and have felt mostly well since that most recent

stenting.). I've been told we want to shoot for MRCPs and bloodwork

once a year, if I am feeling well and my condition does not seem to

be changing (no episodes of cholangitis, no blockages).

Unfortunately, I've not yet been able to go longer than two months

without an imaging study, stenting, etc., but we're hoping to get

there.

I've been instructed to contact my hep *whenever* I am not feeling

well and I feel that something needs to be done about that. He said

*I* am the best judge of my condition, since I am the one living with

PSC. If I'm feeling good, then we don't need to be worried.

It may not be the concrete answer you are looking for, but I HTH.

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07

> I still do not get what to watch for

[Guest guest]

Genevieve, yes this does help. ANd I am sorry you were not feeling well...Tyler does get cold even in the summer as he wears long PJ pants and a T-shirt to bed with tons of blankies. He also does seem to have a low grade fever off and on with headaches. We will definitely ask for an MRCP in July regardless if they want to do it or not despite what the labs show. That way we will know if any changes since last one.. You are right, that is where they started w/ the MRCP when they first diagnosed Tyler, that later lead to ERCP and liver biopsy. Tyler's Sed rate is always high too even when all other labs are good and UC is doing great so that still worries that SED never seems to stabilize. They seem to think it is the UC but I wonder if the SED is any indication of the PSC./inflammation.in liver?

Thanks for the advise....

Stevie Ostos