Re: High Dose Urso Study

[Guest guest]

>

> BTW, what ARE the terrible side effects of Urso that everyone keeps

> mentioning?

==============

Actually, there are only a very few of us who have been unable to tolerate Urso.

In my own

case, I had extremely severe abdominal pains, diarrhea (much worse than usual),

migraines,

nausea, and night terrors (I would wake up screaming, too terrified to go back

to sleep for

hours; normally, I don't even have bad dreams, much less nightmares, and

certainly not the

ghastly terrors that I experienced while on Urso). There may have been other

side effects

that I just don't remember since it's been 7 years ago!

Regards,

Carolyn B. in SC

[Guest guest]

You’re

right Ruth, several studies seem to suggest protection

against colon cancer. And because

it seems most people have no trouble taking it, there is no reason not to

continue taking it if your doctor wants you to.

The only reason I’m

(happy doesn’t fit, glad doesn’t fit - insert word here _ _ ) is because so much time and money has been spent trying

to prove URSO/Actigal/UDCA works, when most studies say it doesn’t

improve PSC progression. I really

want a cure, if not, than at the very least treatment. So I want them to move on, try something

else, than move on again and again until the researchers find something that

works! We aren’t going to

give up by any means, but I want them to keep trying - anything.

Carolyn, Ken couldn’t take URSO either, he stayed nauseated and cramped the

whole time he took it (which wasn’t very long.) Funny thing…..he’s on it now

with no problems at all!

Barb in Texas - Together in the

Fight.... Whatever it Takes!

_,_._,___

[Guest guest]

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]

I think Barb has given us a very concise and to the point summary of URSO's

history vs. PSC.

 

I think Dr. Lindor has indicated, specially during the last 2 or 3 years of the

study course that URSO hasn't been showing much success with the progressing of

PSC. It does reduce some lab values as the ALk PH, ALT and AST, but not the most

important lab values that are being used to calculate MELD, as Barb has

mentioned. And i do believe myself that Dr Lindor wouldn't have shut the study

down if there was a proof or something. Actually, during the last few months,

whenever i ask the study coordinators if the study is going to end their answer

would be that it would probably go for 2 more years.

 

My LFT, mainly the ALK PH, were very high~700 just before i joined the study

back in 2001. Also the ALT/AST. And after only few months they start to

gradually go down, to close to normal about 3yrs ago, then a little above, last

year [i did not know why]. But still great. Although i would sometimes feel bad

that URSO has been actually masking or hiding my true disease course.

Specially when my GI tells me that i am doing fine, like after getting a LF

test results back. It does bother me when my doctors think that everything must

be o.k. w/me and i do not need to worry too much!

So it is kind of confusing. And i am sure it has been doing some good and i

will probably continue on it, although i still do experience a very intense

bouts of pain, sometimes and pain is present all the time. Also i do get

cholangitis such as chills/low fever and sometimes higer, every few days, but

again, i will try to continue the same dose or a little decreased one because of

the reduction of some functions and may be the colon cancer, protection, too.

Subject: RE: Re: High Dose Urso Study

To:

Date: Wednesday, June 18, 2008, 6:50 PM

-----Original Message-----

 If that doesn't translate into better prognosis,  maybe the LVT numbers are

meaningless and we shouldn't bother getting the blood tests.

Study after study has shown URSO does not slow disease progression.  It reduces

lab values, but that’s it, nothing more.  They have been studing URSO, low

dose, high dose, early in disease to late disease for years and years.  I’m

afraid we just have to believe the studies.  Dr Lindor does lots of studies

with PSC pateints, he knows the disease inside and out, and I’m sure this

finding was as big of a let down for him as it was for all of us.  But if there

was any proof or even a hint of something good to come, he would’nt have shut

the study down.  

 

LFT’s are a great guideline, their important numbers to watch, they tell

doctors a lot about how their patient is doing. Much like line markers used in

football.  But….the most important lab values (the goal posts) are the ones

used for MELD scoring.  So URSO can give your team an extra yard or two,

you’re (sadly) still moving towards that goal post.

 

Sorry,                    

 

Barb in Texas - Together in the Fight.... Whatever it Takes!

 

[Guest guest]

For me my GI said he put me on the URSO to hopefully prevent me from

getting more stones forming in my pancreas.

But thanks to all that I read on here I will have a major list of

questions when I finally get to see him on July 2nd Long story short-

he told me to see him in a month on May 20th and couldn't get into

until July 2nd. I don't know if it is just his normal way that he

comes across, but he did not seem all that worried the day of my

ERCP9could have been that he did 6 ERCPs that day).

I do have a question though for you guys--Do some of you have pain in

the RUQ in the back like under the ribs? I most times have just a

mild ache there, but sometimes when I am working (CNA overnights at a

teaching hospital) the pain will flair up really bad about 3/4 way

through my shift. The mild pain does go away most of the time when I

am at home.

I try not to take anything for the pain because I can't take NSAIDs

or aspirin because of ringing in my ears. And now I try not to take

tylenol because I know it is hard on the liver.

Just a quick question,

Beth B (Thornton,CO)

[Guest guest]

Hi Beth

I too have a mild, uumm wouldn't call it pain, it almost feels like

my liver is one size too big for the space its in and I have what

feels like a pressure in my RUQ in my back, about the size of a small

fist. It has never flared up into pain. It is always there, and I

am aware of it having more pressure some times more than others.

I am sure Arne would ask if you are drinking lots of water while you

are working, as I have a sneaking suspicion that with me, when the

pressure increases, I have not been drinking as much water as I could

be.

Sorry I can't help more.

As it has been said so many times before PSC should not cause you any

pain. But we know better...grin.

Best wishes from at the bottom of the world in New Zealand.

> I do have a question though for you guys--Do some of you have pain

in

> the RUQ in the back like under the ribs? I most times have just a

> mild ache there, but sometimes when I am working (CNA overnights at

a

> teaching hospital) the pain will flair up really bad about 3/4 way

> through my shift. The mild pain does go away most of the time when

I

> am at home.

[Guest guest]

Stevie,

Is Tyler on an propanolol? It is used to decrease the blood

pressure in the portal vein and hopefully stop varices forming or bursting. I

get REALLY vivid dreams from it, to the extent where I can wake up bawling. They

aren’t always frightening, or sad, but they are so vivid! I remember

everything which I’ve never done before. I hate the stuff, but if it does

it’s job then it’s a necessary evil.

Maybe this could be the night terrors he experiences.

Penny T

[Guest guest]

Stevie,

Is Tyler on an propanolol? It is used to decrease the blood

pressure in the portal vein and hopefully stop varices forming or bursting. I

get REALLY vivid dreams from it, to the extent where I can wake up bawling. They

aren’t always frightening, or sad, but they are so vivid! I remember

everything which I’ve never done before. I hate the stuff, but if it does

it’s job then it’s a necessary evil.

Maybe this could be the night terrors he experiences.

Penny T

[Guest guest]

Stevie,

Is Tyler on an propanolol? It is used to decrease the blood

pressure in the portal vein and hopefully stop varices forming or bursting. I

get REALLY vivid dreams from it, to the extent where I can wake up bawling. They

aren’t always frightening, or sad, but they are so vivid! I remember

everything which I’ve never done before. I hate the stuff, but if it does

it’s job then it’s a necessary evil.

Maybe this could be the night terrors he experiences.

Penny T

[Guest guest]

Beth,

I have pain in the same place most of the time. It is definitely worse if I get dehydrated working out and on bad eating days. I see a pain mgmt dr. a couple times a year and have a low dose narcotic that I take for it when needed. Its not always excruciating pain but a constant thing that sometimes I don't do so well tolerating. You are certainly not alone with that pain in that spot.

Darcy

do have a question though for you guys--Do some of you have pain in the RUQ in the back like under the ribs?

..

[Guest guest]

>

> Is Tyler on an propanolol? It is used to decrease the blood pressure in the

> portal vein and hopefully stop varices forming or bursting. I get REALLY

> vivid dreams from it, to the extent where I can wake up bawling. They aren't

> always frightening, or sad, but they are so vivid!

==========================

So that's why my dreams have been so weird lately!!!! I didn't even think about

connecting it

to the propranolol (which I started just a few weeks ago). Mine are never

really frightening,

occasionally sad, but as you say ... really, really VIVID!!!!! I'm taking 10

mg. twice a day,

which I think is a rather low dose.

Thanks for the heads up!

Regards,

Carolyn B. in SC

[Guest guest]

>

> Is Tyler on an propanolol? It is used to decrease the blood pressure in the

> portal vein and hopefully stop varices forming or bursting. I get REALLY

> vivid dreams from it, to the extent where I can wake up bawling. They aren't

> always frightening, or sad, but they are so vivid!

==========================

So that's why my dreams have been so weird lately!!!! I didn't even think about

connecting it

to the propranolol (which I started just a few weeks ago). Mine are never

really frightening,

occasionally sad, but as you say ... really, really VIVID!!!!! I'm taking 10

mg. twice a day,

which I think is a rather low dose.

Thanks for the heads up!

Regards,

Carolyn B. in SC

[Guest guest]

>

> Is Tyler on an propanolol? It is used to decrease the blood pressure in the

> portal vein and hopefully stop varices forming or bursting. I get REALLY

> vivid dreams from it, to the extent where I can wake up bawling. They aren't

> always frightening, or sad, but they are so vivid!

==========================

So that's why my dreams have been so weird lately!!!! I didn't even think about

connecting it

to the propranolol (which I started just a few weeks ago). Mine are never

really frightening,

occasionally sad, but as you say ... really, really VIVID!!!!! I'm taking 10

mg. twice a day,

which I think is a rather low dose.

Thanks for the heads up!

Regards,

Carolyn B. in SC

[Guest guest]

Sedimentation rates are not very specific. If sed rate has been relatively consistent (the values tend to fluctuate alot), I wouldn't be concerned (especially if doctors are aware of his labs). I know it's really, really hard not to worry about the future - believe me, I am about the most worry'ing person around - worry about everything!!!, But... over the past couple years (and thanks so much to reading and interacting with this group)... I have become more mellow, relaxed, laid back, however you want to phrase it.

I have seen feel awful when labs looked better than usual and the opposite. He has gotten cholangitis a couple times out of the blue. He went to Hawaii after first being diagnosed and sick as stink for several months - our neighbors let us use their mother's condo in Maui as a wonderful gesture for - he was sick or sleeping about 1/2 the time we were there. Yet, he said as we were leaving, that he felt like he could live again. Those words helped me (and I continue to remember those words)... I'm trying to facilitate his living life to the fullest. That includes being the "mean mom" when need be (which is not infrequent!).

I also believe that our children, in coping with PSC and all else they tend to have, develop much more maturity, compassion, and depth than children who have no physical issues to deal with. No, I wouldn't wish any of this on any of them, but I'll bet they interact with others in a caring and responsible way (at least most of the time) that may not be seen in other kids their age.

And after reading so many posts, I echo other people's words, that because PSC is so variable, and so many people do well for a long period of time, I'm hopeful that things will go well for a long time. Sometimes I think PSC is like Xrays for osteoarthritis - some people have tons of pain, yet their xrays look normal. Others have horrid looking Xrays and little or no pain. For me as a Nurse Practitioner, I treat their pain and symptoms.

I'm ready that when 's PSC progresses, we'll deal with it. In the meantime, I will fight to get more research into both cure and treatment. AND I will send letters to the people Barb gave us information to at the National Institute of Health. If each of us uses our collective power, we can get the word out and increase the research focus. I'm going to email my family and several friends and ask them to send letters to the NIH too.

Sorry, I've rambled on. I remember so clearly how devastated I felt when we first heard about the PSC diagnosis. It took months before I felt like I had any depth of knowledge and I thank folks in this group for that! And for everyone's support. And for our efforts to fund research. And now I thank Dr Lindor and Barb for what we can do in the next few weeks to influence the "movers and shakers" of research at the NIH!

Joanne H

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

Genevieve, yes this does help. ... 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