Re: Help newly diagnosed with PSC don't know where to turn

[Guest guest]

Dear Sorry to hear of your diagnosis but you can take a big breath and learn to live with this disease.It is a slowly progressive disease. To start learning more about PSC go to the web site of PSC Partners Seeking a Cure :www.pscpartners.orgOn the left hand side is a link to our Brochure, Living with PSC.This is a good place to start. When my son was diagnosed we were referred to the Mayo in Rochester MN.  where they see a lot of PSC. We were glad we went there for the second opinion. Dr. Lindor is well known there for his work with PSC though we saw one of his colleagues, Dr. Tallwalker.A lot of people here are taking high dose URSO to thin the bike, fish oil and a few other supplements.It your enzymes are not elevated, this is a good thing. Everything is going to be OK, take it slow and educate yourself on PSC. On the Partners site you will see that the next PSC conference will be at the FL Mayo in May. If you were to come, you would meet many living with PSC and doing well.Take care,LeePS I'm sorry about your daughters leukemia and I hope that you will both do well.4 weeks ago I was diagnosed with crohns disease and went for a cat scan enterography and the doc called on Saturday and told me I have PSC. He wants to do an ERCP. I am really upset. My 13 year old daughter suffered for 4 years with leukemia and we couldnt' find a bone marrow donor suitable enough. She is doing well due to additional chemo. Now the PSC diagnosis. I live in New York (Long Island) but want to make sure I am on the right path of treatment. Is there a facility and doc that sees the most of this or the guru in the field? What meds help? I don't have elevations yet in my enzymes. Not sure what to do next. The stess is very difficult to handle!ThanksChris

[Guest guest]

I know you are feeling overwhelmed right now. PSC is

confusing and scary, but you came to the right place. We found out

about my husband's PSC and UC about 3 months after my brother's

leukemia went into remission. Along with the chemo, my brother

Eddie, took a drug called Vesinoid in an experimental use for his

type of leukemia. He has been cancer free for about 6 years now. He

still has yearly checkups. My point is, I know what dealing with

family health problems in multitude is all about. In addition to my

husband and brother, my husband's mother lost the battle with colon

cancer right around the time he was listed for transplant (the same

week actually). To say I've been overwhelmed at times is an

understatement. This support group has been a big help in getting me

through it. The people here can answer any question about PSC you

can think of. Just to let you know, my husband had his liver

transplant this past November at Vanderbilt. We are approaching a

year and his life is SO much better, it's amazing how much better he

is. Let us know if you need help dealing with anything.

wife of

UC & PSC 2000 J pouch 2004 Tx 11-18-06

[Guest guest]

Thank you for your email. My Gi doctor from Mt. Sinai called me on Saturday afternoon to tell me the results of the cat scan enterography I had on Thursday. He said my small intestine was much less inflamed meaning the crohn's medications were working. He said he checked the findings with another associate because he found the ducts to the liver (bile duct) was inflamed as well. He wanted to do an ERCP to fine out the extent of the inflammation. He said the condition was called PSC and although he wanted to emphasis he thought it was mild it was important to determine the extent of inflammation to gauge treatment. He mentioned liver biopsy but to start with ERCP.

Throughout my daughter's treatment for leukemia which began in 2000 I have found I have to question and do research myself to be educated to ask the right questions. When I research PSC I found that those who have IBD usually have UC not crohns (75%) and are also men (70%). Maybe I am in denial or something but can't this be another something disguised as PSC. I have read how serious this disease is and can't stop crying. Can just the MRCP determine if it is PSC?? I understand the ERCP is the gold standard but I have nothing elevated what so ever. So confusing.

Thanks again

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[Guest guest]

Hi Chris;

I don't know what your doctor saw on the CT enterography to reach a

conclusion that you have PSC. But PSC is almost always accompanied by

elevated liver enzymes [particulary alkaline phosphatase and gamma-

glutamyltranspeptidase](and apparently you do not have this sign!).

Imaging of the bile-ducts with either ERCP or MRCP is usually

required to reach a firm diagnosis (i.e. observation of a

characteristic beaded appearance of the bile ducts in MRCP or ERCP),

and exclude other causes. Since you have not yet had the ERCP (and

apparently have not had a liver biopsy) you should not assume that

you have PSC. It is also usual to eliminate types of secondary

sclerosing cholangitis before reaching a PSC diagnosis:

Hepatology. 2006 Nov;44(5):1063-74.

Sclerosing cholangitis: a focus on secondary causes.

Abdalian R, Heathcote EJ

Department of Medicine, University Health Network, Toronto Western

Hospital, University of Toronto, Toronto, Ontario, Canada.

Secondary sclerosing cholangitis (SSC) is a disease that is

morphologically similar to primary sclerosing cholangitis (PSC) but

that originates from a known pathological process. Its clinical and

cholangiographic features may mimic PSC, yet its natural history may

be more favorable if recognition is prompt and appropriate therapy is

introduced. Thus, the diagnosis of PSC requires the exclusion of

secondary causes of sclerosing cholangitis and recognition of

associated conditions that may potentially imitate its classic

cholangiographic features. Well-described causes of SSC include

intraductal stone disease, surgical or blunt abdominal trauma, intra-

arterial chemotherapy, and recurrent pancreatitis. However, a wide

variety of other associations have been reported recently, including

autoimmune pancreatitis, portal biliopathy, eosinophillic and/or mast

cell cholangitis, hepatic inflammatory pseudotumor, recurrent

pyogenic cholangitis, primary immune deficiency, and AIDS-related

cholangiopathy. This article offers a comprehensive review of SSC.

PMID: 17058222.

Have you asked your doctor why he/she thinks you have PSC? This is a

very serious diagnosis and should not be given to anyone without good

evidence.

As others have mentioned, Mayo clinic, Rochester, MN, would be a

great place for a second opinion. Dr. Lindor of Mayo clinic

would be considerd a 'guru'.

Sorry to hear about your daughter's leukemia, but I hope the chemo is

successful and that she has a speedy recovery.

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

[Guest guest]

Hi ;

MRCP is apparently quite good for imaging the bile ducts, and is an

excellent non-invasive alternative to ERCP for diagnostic purposes:

Cleve Clin J Med. 2006 May;73(5):418, 421, 424-5

ERCP: current uses and less-invasive options.

Dumot JA

Department of Gastroenterology and Hepatology, Cleveland Clinic,

Cleveland Clinic Foundation, OH 44195, USA. dumotj@...

Endoscopic retrograde cholangiopancreatography (ERCP) is well suited

for the evaluation and treatment of diseases of the bile ducts and

pancreas, but it carries the risk of inducing pancreatitis. Magnetic

resonance cholangiopancreatography (MRCP) and endoscopic

ultrasonography have exceptional value in imaging the gallbladder,

common hepatic duct, common bile duct, and pancreas. These imaging

studies have replaced ERCP for diagnostic purposes in patients with a

low pretest probability of finding lesions amenable to endoscopic

therapy, such as bile duct stones. PMID: 16708711.

see also:

http://www.ercp.ucla.edu/pages/info/procedures/mri-mrcp.html

An ERCP would be preferable, however, if there was evidence of bile

duct stones or bile duct obstructions that were amenable to

dilatation.

You are correct that PSC mostly affects men (2:1 over women), and is

more commonly associated with ulcerative colitis than Crohn's

disease.

I don't think that you are in denial ... you are perfectly correct to

be skeptical until you are shown strong evidence. From what you have

described, the absence of any elevated liver enzymes indicative of

bile-duct injury, does not seem entirely consistent with PSC at the

moment, and you should therefore wait until the results of the ERCP

(or MRCP) before you accept a PSC diagnosis.

You might ask your doctor if the mild inflammation seen in the CT

enterography could possibly be from other causes, such as gallstones:

http://www.medicinenet.com/gallstones/article.htm

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

[Guest guest]

I would just like to point out that the ERCP & MRCP may show normal bile

ducts, and a person can still have small-duct PSC. At times when you have

this the liver enzymes can be normal for a long time. My PSC started as

small-duct PSC.

<html><DIV><FONT face= " Garamond, Times, Serif " color=#6600cc><STRONG>Marie

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>

>Reply-To:

>To:

>Subject: Re: Help newly diagnosed with PSC don't know where

>to turn

>Date: Mon, 01 Oct 2007 03:32:03 -0000

>

>Hi ;

>

>MRCP is apparently quite good for imaging the bile ducts, and is an

>excellent non-invasive alternative to ERCP for diagnostic purposes:

>

>Cleve Clin J Med. 2006 May;73(5):418, 421, 424-5

>

>ERCP: current uses and less-invasive options.

>

>Dumot JA

>

>Department of Gastroenterology and Hepatology, Cleveland Clinic,

>Cleveland Clinic Foundation, OH 44195, USA. dumotj@...

>

>Endoscopic retrograde cholangiopancreatography (ERCP) is well suited

>for the evaluation and treatment of diseases of the bile ducts and

>pancreas, but it carries the risk of inducing pancreatitis. Magnetic

>resonance cholangiopancreatography (MRCP) and endoscopic

>ultrasonography have exceptional value in imaging the gallbladder,

>common hepatic duct, common bile duct, and pancreas. These imaging

>studies have replaced ERCP for diagnostic purposes in patients with a

>low pretest probability of finding lesions amenable to endoscopic

>therapy, such as bile duct stones. PMID: 16708711.

>

>see also:

>

>http://www.ercp.ucla.edu/pages/info/procedures/mri-mrcp.html

>

>An ERCP would be preferable, however, if there was evidence of bile

>duct stones or bile duct obstructions that were amenable to

>dilatation.

>

>You are correct that PSC mostly affects men (2:1 over women), and is

>more commonly associated with ulcerative colitis than Crohn's

>disease.

>

>I don't think that you are in denial ... you are perfectly correct to

>be skeptical until you are shown strong evidence. From what you have

>described, the absence of any elevated liver enzymes indicative of

>bile-duct injury, does not seem entirely consistent with PSC at the

>moment, and you should therefore wait until the results of the ERCP

>(or MRCP) before you accept a PSC diagnosis.

>

>You might ask your doctor if the mild inflammation seen in the CT

>enterography could possibly be from other causes, such as gallstones:

>

>http://www.medicinenet.com/gallstones/article.htm

>

>Best regards,

>

>Dave

>(father of (23); PSC 07/03; UC 08/03)

>

>

>

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[Guest guest]

Hi Marie;

That's true, but there is no evidence of elevated LFT's and the

doctor seems concerned about mild inflammation of a large duct seen

in CT enterography. I thought for small duct PSC you would have to

have elevated LFTs with a cholestatic pattern [i.e. elevated alkaline

phosphatase] but a normal cholangiogram with no large duct

involvement?

Marie, I hope that your sister's elevated LFT's are not due to PSC,

but rather to her medication(s). Do her LFT's show increased alkaline

phosphatase, or just ALT and AST?

Best regards,

Dave R.

> I would just like to point out that the ERCP & MRCP may show normal

bile ducts, and a person can still have small-duct PSC. At times

when you have this the liver enzymes can be normal for a long time.

My PSC started as small-duct PSC.

[Guest guest]

We live in upstate NY but go to Mass to Lahey in Burlingtom. Finding a donor for a liver is much easier than liver as far as the match. It is a matter of blood type and the physical shape of the donor. You may never need a transplant or it could be years. Learn all you can about this disease and know we are here to support you. Keep a journal as you will receive alot of information and have alot of questions. Check on what you insurance covers. They will try to avoid paying for things because that is what they do. I just kept asking to talk to someone higher up the food chain til I got what I needed and got it in writing. Everone gets different sypmtoms at different severity. Many Drs don't know alot about his except to shake their head at you and tell you how sorry they are. There are great Drs out there. Get a good hepatologist. Good luck. ikki0294 wrote: 4 weeks ago I was diagnosed with crohns disease and went for a cat scan enterography and the doc called on Saturday and told me I have PSC. He wants to do an ERCP. I am really upset. My 13 year old daughter suffered for 4 years with leukemia and we couldnt' find a bone marrow donor suitable enough. She is doing well due to additional chemo. Now the PSC diagnosis. I live in New York (Long Island) but want to make sure I am on the right path of treatment. Is there a facility and doc that sees the most of this or the guru in the field? What meds help? I don't

have elevations yet in my enzymes. Not sure what to do next. The stess is very difficult to handle!ThanksChris

Yahoo! oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

Chris; go see Dr. Pratt at Massachusetts General in Boston; he is wonderful and sees my daughter every year for her PSC....-----Original Message-----From: [mailto: ]On Behalf Of Marti Sent: Monday, October 01, 2007 5:55 AMTo: Subject: Re: Help newly diagnosed with PSC don't know where to turnChrisWe live in upstate NY but go to Mass to Lahey in Burlingtom. Finding a donor for a liver is much easier than liver as far as the match. It is a matter of blood type and the physical shape of the donor. You may never need a transplant or it could be years. Learn all you can about this disease and know we are here to support you. Keep a journal as you will receive alot of information and have alot of questions. Check on what you insurance covers. They will try to avoid paying for things because that is what they do. I just kept asking to talk to someone higher up the food chain til I got what I needed and got it in writing. Everone gets different sypmtoms at different severity. Many Drs don't know alot about his except to shake their head at you and tell you how sorry they are. There are great Drs out there. Get a good hepatologist. Good luck.ikki0294 <nikki0294 (AT) aol (DOT) com> wrote:4 weeks ago I was diagnosed with crohns disease and went for a cat scan enterography and the doc called on Saturday and told me I have PSC. He wants to do an ERCP. I am really upset. My 13 year old daughter suffered for 4 years with leukemia and we couldnt' find a bone marrow donor suitable enough. She is doing well due to additional chemo. Now the PSC diagnosis. I live in New York (Long Island) but want to make sure I am on the right path of treatment. Is there a facility and doc that sees the most of this or the guru in the field? What meds help? I don't have elevations yet in my enzymes. Not sure what to do next. The stess is very difficult to handle!ThanksChrisYahoo! oneSearch: Finally, mobile search that gives answers, not web links. The contents of this electronic mail message and any attachments are confidential, possibly privileged and intended for the addressee(s) only. Only the addressee(s) may read, disseminate, retain or otherwise use this message. If received in error, please immediately inform the sender and then delete this message without disclosing its contents to anyone.

[Guest guest]

I haven't seen the test results and my sister wasn't specific so I don't

know how high the results were either. I think she's in denial that it can

be anything serious. Also she would probably be medically categorized as a

heavy drinker, and I'm sure the thought of quiting alcohol altogether is not

a good one for her. So the cholesterol meds & alcohol are no doubt

contributers. I'd like to go with her when she sees the doctor, if she'll

let me. She's very independent.

-Marie

>

>Marie, I hope that your sister's elevated LFT's are not due to PSC,

>but rather to her medication(s). Do her LFT's show increased alkaline

>phosphatase, or just ALT and AST?

>

>Best regards,

>

>Dave R.

>

>

>

>

> > I would just like to point out that the ERCP & MRCP may show normal

>bile ducts, and a person can still have small-duct PSC. At times

>when you have this the liver enzymes can be normal for a long time.

>My PSC started as small-duct PSC.

>

>

>

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[Guest guest]

Hi Marie

How did they diagnose you with PSC if it didn't show up on the MRCP or

ERCP? My LFTs are noraml. I have crohns so I have pain on my right

side. The only thing other than the pain is the diarrhea. What else

can I do to get the right diagnosis?

Thanks

Chris

[Guest guest]

It took years to get a definitive diagnosis of the PSC, since the MRCP &

ERCP done in about 2002 were normal. But when I had the colectomy in 2000,

the surgeon said the liver looked cirrohtic. A liver biopsy was done during

surgery, and it was inconclusive, but consistent with PSC. My LFTs were

really high after the surgery, but slowly came down to normal. The GI doc

didn't think it could be PSC since the LFTs went back to normal and since it

was so rare. However, I've had UC since at least 1970. I had mild symptoms

or itching and some fatigue. So I thought it was small duct PSC. In about

2002, 2003, the LFTs went up again. At that point I had a new GI, who sent

me to a hepatologist. The first hep thought it might be small duct PSC, but

couldn't say definitively. So I went to another hep, who said there was

nothing wrong with my liver. I let it go for a while, but then went back to

the first hep in about 2005. He wanted to see me every 6 months, and

eventually said he thought it was small duct PSC. Then in Nov 2006 the LFTs

went sky high. The hep thought it was autoimmune hepatitis, and he scheduled

another liver biopsy immediately. The biopsy came back positive for both PSC

& AIH. And this is the condensed version of events. I've left out the

j-pouch & disability & other things that have gone on.

>

>Reply-To:

>To:

>Subject: Re: Help newly diagnosed with PSC don't know where

>to turn

>Date: Sun, 07 Oct 2007 05:06:37 -0000

>

>Hi Marie

>How did they diagnose you with PSC if it didn't show up on the MRCP or

>ERCP? My LFTs are noraml. I have crohns so I have pain on my right

>side. The only thing other than the pain is the diarrhea. What else

>can I do to get the right diagnosis?

>

>Thanks

>Chris

>

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