RE: MRCP/ ERCP used as monitoring tools

[Guest guest]

My hep is not in favor of ERCPs without a reason (i.e., no symptoms = no ERCP).

I've not had one since 2001 as a result. Since 2 out of 3 were followed by

pancreatitis, I'm not complaining. I've never had an MRCP.

I do see him twice a year (mostly for LFTs and " how are you doing " ); once a year

I get a liver ultrasound. I've had bone density measurements twice, but since

there was no change (and it was normal), no more tests for it, for now.

Arne

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

Dear All,

....My question is: are annual (or even every other year) ERCP's an important

tool in monitoring the progression of PSC? In addition, would MRCP's be an

effective enough tool in monitoring the progression?..

[Guest guest]

My hep is not in favor of ERCPs without a reason (i.e., no symptoms = no ERCP).

I've not had one since 2001 as a result. Since 2 out of 3 were followed by

pancreatitis, I'm not complaining. I've never had an MRCP.

I do see him twice a year (mostly for LFTs and " how are you doing " ); once a year

I get a liver ultrasound. I've had bone density measurements twice, but since

there was no change (and it was normal), no more tests for it, for now.

Arne

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

Dear All,

....My question is: are annual (or even every other year) ERCP's an important

tool in monitoring the progression of PSC? In addition, would MRCP's be an

effective enough tool in monitoring the progression?..

[Guest guest]

My hep is not in favor of ERCPs without a reason (i.e., no symptoms = no ERCP).

I've not had one since 2001 as a result. Since 2 out of 3 were followed by

pancreatitis, I'm not complaining. I've never had an MRCP.

I do see him twice a year (mostly for LFTs and " how are you doing " ); once a year

I get a liver ultrasound. I've had bone density measurements twice, but since

there was no change (and it was normal), no more tests for it, for now.

Arne

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

Dear All,

....My question is: are annual (or even every other year) ERCP's an important

tool in monitoring the progression of PSC? In addition, would MRCP's be an

effective enough tool in monitoring the progression?..

[Guest guest]

Hi Ellen,

I think having a ERCP is important to have

in monitoring the progression of PSC.

The MRCP is not effective enough to

monitor the progression of PSC from what my doctor has advised me.

The MRCP does not get inside of the bile

ducts going into the liver like a ERCP and if there is any blockage or

narrowing of the ducts they can clean up with the ERCP and cannot do this

procedure with a MRCP.  I have had 2 so far and that has been every 2 years

that they have done a ERCP. My doctor only does one when he thinks there is

something going on with respect to my blood tests concerning my liver enzymes

levels being elevated. I had my last ERCP last week and they did this because

of high fevers/chills and thought I had a case of cholangitis but they instead

found a fishing wire yes a fishing wire in my stomach lining wall and had

bacteria all over this foreign object. They think this is why I was having

these attacks (cholangitis) or fever/chills because of this bacteria foreign

object. I am still waiting to hear back from them

Since they had to send off to the pathology

department for the final results.

I did not have any complications for the

first ERCP but this last one I had some pretty good pain for about 3-4 days and

then the pain went away. I guess I had a mild case of acute pancreatitis? I think

arne mentioned this and some other people on this site after a ERCP procedure.

I hope that this helps you.

Dave

PSC since 2004

From: [mailto: ] On Behalf Of Ellen Wallace

Sent: Wednesday, October 04, 2006

6:34 AM

To:

Subject: MRCP/ ERCP

used as monitoring tools

Dear All,

I'm interesting in hearing your experiences concerning the above.

My husband's blood tests have pretty much normalized since his starting

on high dose Urso last year. We are of course extremely relieved by this.

My question is: are annual (or even every other year) ERCP's an

important tool in monitoring the progression of PSC? In addition, would

MRCP's be an effective enough tool in monitoring the progression?

I'm interesting in hearing how your doctors have been dealing with the

monitoring of the PSC.

Thank you.

Warm regards,

Ellen

(wife of PSC 2002, cholecystectomy 2006)

 

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Thank You

[Guest guest]

Dear Ellen,

My doctor often did an MRCP prior to doing an ERCP. All three

transplant centers where I was listed required patients to have

yearly MRCPs, but not ERCPs. The MRCP was a tool that he could use

to monitor for signs of cancer as well as see what was up with the

bile ducts before deciding to do an ERCP. From the time I was

diagnosed to the time I was transplanted though, I had 11 ERCP's -

from 1998 - 2005, and in all but three of these, they did something

theraputic.

There were specific reasons for doing the ERCPs when we didn't

dilate the ducts or leave stents. The first time, I was being

diagnosed and there was nothing to treat, yet. The second, I was

pregnant and they wanted to make sure my ducts were clear before the

pregnancy went too far. And finally the third one when he did

nothing was after the pregancy when we thought there'd be lots to

do, but I was having an autoimmune flare instead.

Towards the end, my ERCPs were every six months, and we did them

because of symptoms, not because we'd done an MRCP. If I'd waited

for a liver rather than using a living donor, I think they would

have been even closer together after that. So, I'd agree that if

there's something to treat (stones or strictures) an ERCP is

warranted. If they do go in, be sure to have them do brushings for

cancer screening.

HTH,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005...updates see

www.caringbridge.org/va/deniseb

>

> Dear All,

>

> I'm interesting in hearing your experiences concerning the above.

>

> My husband's blood tests have pretty much normalized since his

starting on high dose Urso last year. We are of course extremely

relieved by this.

>

> My question is: are annual (or even every other year) ERCP's an

important tool in monitoring the progression of PSC? In addition,

would MRCP's be an effective enough tool in monitoring the

progression?

>

> I'm interesting in hearing how your doctors have been dealing

with the monitoring of the PSC.

>

> Thank you.

>

> Warm regards,

> Ellen

>

>

> (wife of PSC 2002, cholecystectomy 2006)

>

>

>

> ---------------------------------

> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>

[Guest guest]

Dear Ellen,

My doctor often did an MRCP prior to doing an ERCP. All three

transplant centers where I was listed required patients to have

yearly MRCPs, but not ERCPs. The MRCP was a tool that he could use

to monitor for signs of cancer as well as see what was up with the

bile ducts before deciding to do an ERCP. From the time I was

diagnosed to the time I was transplanted though, I had 11 ERCP's -

from 1998 - 2005, and in all but three of these, they did something

theraputic.

There were specific reasons for doing the ERCPs when we didn't

dilate the ducts or leave stents. The first time, I was being

diagnosed and there was nothing to treat, yet. The second, I was

pregnant and they wanted to make sure my ducts were clear before the

pregnancy went too far. And finally the third one when he did

nothing was after the pregancy when we thought there'd be lots to

do, but I was having an autoimmune flare instead.

Towards the end, my ERCPs were every six months, and we did them

because of symptoms, not because we'd done an MRCP. If I'd waited

for a liver rather than using a living donor, I think they would

have been even closer together after that. So, I'd agree that if

there's something to treat (stones or strictures) an ERCP is

warranted. If they do go in, be sure to have them do brushings for

cancer screening.

HTH,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005...updates see

www.caringbridge.org/va/deniseb

>

> Dear All,

>

> I'm interesting in hearing your experiences concerning the above.

>

> My husband's blood tests have pretty much normalized since his

starting on high dose Urso last year. We are of course extremely

relieved by this.

>

> My question is: are annual (or even every other year) ERCP's an

important tool in monitoring the progression of PSC? In addition,

would MRCP's be an effective enough tool in monitoring the

progression?

>

> I'm interesting in hearing how your doctors have been dealing

with the monitoring of the PSC.

>

> Thank you.

>

> Warm regards,

> Ellen

>

>

> (wife of PSC 2002, cholecystectomy 2006)

>

>

>

> ---------------------------------

> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>

[Guest guest]

Dear Ellen,

My doctor often did an MRCP prior to doing an ERCP. All three

transplant centers where I was listed required patients to have

yearly MRCPs, but not ERCPs. The MRCP was a tool that he could use

to monitor for signs of cancer as well as see what was up with the

bile ducts before deciding to do an ERCP. From the time I was

diagnosed to the time I was transplanted though, I had 11 ERCP's -

from 1998 - 2005, and in all but three of these, they did something

theraputic.

There were specific reasons for doing the ERCPs when we didn't

dilate the ducts or leave stents. The first time, I was being

diagnosed and there was nothing to treat, yet. The second, I was

pregnant and they wanted to make sure my ducts were clear before the

pregnancy went too far. And finally the third one when he did

nothing was after the pregancy when we thought there'd be lots to

do, but I was having an autoimmune flare instead.

Towards the end, my ERCPs were every six months, and we did them

because of symptoms, not because we'd done an MRCP. If I'd waited

for a liver rather than using a living donor, I think they would

have been even closer together after that. So, I'd agree that if

there's something to treat (stones or strictures) an ERCP is

warranted. If they do go in, be sure to have them do brushings for

cancer screening.

HTH,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005...updates see

www.caringbridge.org/va/deniseb

>

> Dear All,

>

> I'm interesting in hearing your experiences concerning the above.

>

> My husband's blood tests have pretty much normalized since his

starting on high dose Urso last year. We are of course extremely

relieved by this.

>

> My question is: are annual (or even every other year) ERCP's an

important tool in monitoring the progression of PSC? In addition,

would MRCP's be an effective enough tool in monitoring the

progression?

>

> I'm interesting in hearing how your doctors have been dealing

with the monitoring of the PSC.

>

> Thank you.

>

> Warm regards,

> Ellen

>

>

> (wife of PSC 2002, cholecystectomy 2006)

>

>

>

> ---------------------------------

> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>

[Guest guest]

My doctor (Dr. Raiford at Vanderbilt) doesn't routinely use ERCP to

monitor PSC, and that's fine with me. My opinion is that if a procedure

isn't being performed to check a specific symptom, or to perform a

needed procedure, it's probably not worth it, especially with something

like ERCP which can have significant side effects/complications.

All that said, there are some things that should be checked on

periodically. I'd encourage people who've had PSC for a number of years

to get an EGD done every once in a while to make sure that varices

aren't a problem (unless you're having regular ERCPs in which case they

can check for varices then). I've got varices, and so I have to have

EGDs every six months... I'm sure there are those with other problems

which do warrant regular ERCPs, so if your doctor wants you to have them

there may be a good reason!

athan

[Guest guest]

My doctor (Dr. Raiford at Vanderbilt) doesn't routinely use ERCP to

monitor PSC, and that's fine with me. My opinion is that if a procedure

isn't being performed to check a specific symptom, or to perform a

needed procedure, it's probably not worth it, especially with something

like ERCP which can have significant side effects/complications.

All that said, there are some things that should be checked on

periodically. I'd encourage people who've had PSC for a number of years

to get an EGD done every once in a while to make sure that varices

aren't a problem (unless you're having regular ERCPs in which case they

can check for varices then). I've got varices, and so I have to have

EGDs every six months... I'm sure there are those with other problems

which do warrant regular ERCPs, so if your doctor wants you to have them

there may be a good reason!

athan

[Guest guest]

My doctor (Dr. Raiford at Vanderbilt) doesn't routinely use ERCP to

monitor PSC, and that's fine with me. My opinion is that if a procedure

isn't being performed to check a specific symptom, or to perform a

needed procedure, it's probably not worth it, especially with something

like ERCP which can have significant side effects/complications.

All that said, there are some things that should be checked on

periodically. I'd encourage people who've had PSC for a number of years

to get an EGD done every once in a while to make sure that varices

aren't a problem (unless you're having regular ERCPs in which case they

can check for varices then). I've got varices, and so I have to have

EGDs every six months... I'm sure there are those with other problems

which do warrant regular ERCPs, so if your doctor wants you to have them

there may be a good reason!

athan

[Guest guest]

I agree with Dave's comments. My LFTs have been within a normal range for over 7 years, ever since I started on URSO. My duct blockage, however, was significant last fall when I finally persuaded my provider to do my first-ever MRCP (they had previously failed at 2 different ERCP attempts in 1999, and never tried any diagnostics again). The MRCP clearly showed blockage that led to my being referred to a specialist for my first successful ERCP that included just a tad bit of surgery along with balloon dilitation. No complications. It's been nearly a year now since my ERCP/surgery; my LFTs remain within a normal range. I changed providers and am now lobbying to get either an MRCP or an ERCP this fall to check my ductwork. I'm in chronic pain (URQ) and blood work has never told the whole story for me - but then my body has alway been somewhat weird. When I'm in physical

stress (late stage childbirth, post-surgery, etc.), my blood pressure actually drops - really low, rather than rising as with most people. I warn my caregivers each time, but they still seem amazed when they see it happen. Nobody can know our bodies as well as we do. We know what's normal & what's not, and need to learn to trust our instincts. I'm all for diagnostics and personally prefer the ERCP because they can do the biopsies as well as fixing problem areas they encounter while they're already inside. Debbie in Seattle UC 1972, JPouch 1991, chronic pouchitis, abnormal LFTs 1999, PSC confirmed 2005

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.

[Guest guest]

I agree with Dave's comments. My LFTs have been within a normal range for over 7 years, ever since I started on URSO. My duct blockage, however, was significant last fall when I finally persuaded my provider to do my first-ever MRCP (they had previously failed at 2 different ERCP attempts in 1999, and never tried any diagnostics again). The MRCP clearly showed blockage that led to my being referred to a specialist for my first successful ERCP that included just a tad bit of surgery along with balloon dilitation. No complications. It's been nearly a year now since my ERCP/surgery; my LFTs remain within a normal range. I changed providers and am now lobbying to get either an MRCP or an ERCP this fall to check my ductwork. I'm in chronic pain (URQ) and blood work has never told the whole story for me - but then my body has alway been somewhat weird. When I'm in physical

stress (late stage childbirth, post-surgery, etc.), my blood pressure actually drops - really low, rather than rising as with most people. I warn my caregivers each time, but they still seem amazed when they see it happen. Nobody can know our bodies as well as we do. We know what's normal & what's not, and need to learn to trust our instincts. I'm all for diagnostics and personally prefer the ERCP because they can do the biopsies as well as fixing problem areas they encounter while they're already inside. Debbie in Seattle UC 1972, JPouch 1991, chronic pouchitis, abnormal LFTs 1999, PSC confirmed 2005

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.

[Guest guest]

> My question is: are annual (or even every other year) ERCP's an important

tool in

monitoring the progression of PSC? In addition, would MRCP's be an effective

enough tool in

monitoring the progression?

ERCP carries small but significant risks, of infection and pancreatitis. These

risks are

increased if interventions like dilatation/stenting, or injecting the dye under

back-pressure

are done. My endoscopist does ERCP only if there is some purpose to it that

might be a

treatment (stenting), or might change the treatment (ie, brushings for cancer

monitoring),

but not as a routine diagnostic. My MRCP last August showed significant biliary

dilatation and

that the left lobe was atrophied, suggesting a stricture, so he followed up with

ERCP. I think

using the MRCP as a first pass evaluation, and following with ERCP only if there

is something

new, is a conservative approach that minimizes the risks from invasive

procedures. If

something new appears that warrants investigation, you can always have the ERCP

to follow

up.

Martha (MA)

[Guest guest]

> My question is: are annual (or even every other year) ERCP's an important

tool in

monitoring the progression of PSC? In addition, would MRCP's be an effective

enough tool in

monitoring the progression?

ERCP carries small but significant risks, of infection and pancreatitis. These

risks are

increased if interventions like dilatation/stenting, or injecting the dye under

back-pressure

are done. My endoscopist does ERCP only if there is some purpose to it that

might be a

treatment (stenting), or might change the treatment (ie, brushings for cancer

monitoring),

but not as a routine diagnostic. My MRCP last August showed significant biliary

dilatation and

that the left lobe was atrophied, suggesting a stricture, so he followed up with

ERCP. I think

using the MRCP as a first pass evaluation, and following with ERCP only if there

is something

new, is a conservative approach that minimizes the risks from invasive

procedures. If

something new appears that warrants investigation, you can always have the ERCP

to follow

up.

Martha (MA)

[Guest guest]

> My question is: are annual (or even every other year) ERCP's an important

tool in

monitoring the progression of PSC? In addition, would MRCP's be an effective

enough tool in

monitoring the progression?

ERCP carries small but significant risks, of infection and pancreatitis. These

risks are

increased if interventions like dilatation/stenting, or injecting the dye under

back-pressure

are done. My endoscopist does ERCP only if there is some purpose to it that

might be a

treatment (stenting), or might change the treatment (ie, brushings for cancer

monitoring),

but not as a routine diagnostic. My MRCP last August showed significant biliary

dilatation and

that the left lobe was atrophied, suggesting a stricture, so he followed up with

ERCP. I think

using the MRCP as a first pass evaluation, and following with ERCP only if there

is something

new, is a conservative approach that minimizes the risks from invasive

procedures. If

something new appears that warrants investigation, you can always have the ERCP

to follow

up.

Martha (MA)

[Guest guest]

My son has had 15 ERCPs because of stictures/stones/sludge. He had a

series of dilations and then stents replaced regularly. He had MRCPs

initially that diagnosed the stones and inbetween his first several

ERCPs. He will now be getting MRCPs to monitor his progression because

he has not needed stenting in a while after having had his second

sphincterotmy. His strictures were in his common bile duct, so the big

opening has helped his bile flow (for now at least)

MRCPs used to be considered not as acurate but from what I have read

are now as effective in monitoring progress and an ERCP can always be

done afterwards too.

Lori

lucky mom blessed with wonderfully wild 10 year old triplets

[Guest guest]

My son has had 15 ERCPs because of stictures/stones/sludge. He had a

series of dilations and then stents replaced regularly. He had MRCPs

initially that diagnosed the stones and inbetween his first several

ERCPs. He will now be getting MRCPs to monitor his progression because

he has not needed stenting in a while after having had his second

sphincterotmy. His strictures were in his common bile duct, so the big

opening has helped his bile flow (for now at least)

MRCPs used to be considered not as acurate but from what I have read

are now as effective in monitoring progress and an ERCP can always be

done afterwards too.

Lori

lucky mom blessed with wonderfully wild 10 year old triplets

[Guest guest]

My son has had 15 ERCPs because of stictures/stones/sludge. He had a

series of dilations and then stents replaced regularly. He had MRCPs

initially that diagnosed the stones and inbetween his first several

ERCPs. He will now be getting MRCPs to monitor his progression because

he has not needed stenting in a while after having had his second

sphincterotmy. His strictures were in his common bile duct, so the big

opening has helped his bile flow (for now at least)

MRCPs used to be considered not as acurate but from what I have read

are now as effective in monitoring progress and an ERCP can always be

done afterwards too.

Lori

lucky mom blessed with wonderfully wild 10 year old triplets

[Guest guest]

My son has had 15 ERCPs because of stictures/stones/sludge. He had a

series of dilations and then stents replaced regularly. He had MRCPs

initially that diagnosed the stones and inbetween his first several

ERCPs. He will now be getting MRCPs to monitor his progression because

he has not needed stenting in a while after having had his second

sphincterotmy. His strictures were in his common bile duct, so the big

opening has helped his bile flow (for now at least)

MRCPs used to be considered not as acurate but from what I have read

are now as effective in monitoring progress and an ERCP can always be

done afterwards too.

Lori

lucky mom blessed with wonderfully wild 10 year old triplets

[Guest guest]

My son has had 15 ERCPs because of stictures/stones/sludge. He had a

series of dilations and then stents replaced regularly. He had MRCPs

initially that diagnosed the stones and inbetween his first several

ERCPs. He will now be getting MRCPs to monitor his progression because

he has not needed stenting in a while after having had his second

sphincterotmy. His strictures were in his common bile duct, so the big

opening has helped his bile flow (for now at least)

MRCPs used to be considered not as acurate but from what I have read

are now as effective in monitoring progress and an ERCP can always be

done afterwards too.

Lori

lucky mom blessed with wonderfully wild 10 year old triplets

[Guest guest]

My son has had 15 ERCPs because of stictures/stones/sludge. He had a

series of dilations and then stents replaced regularly. He had MRCPs

initially that diagnosed the stones and inbetween his first several

ERCPs. He will now be getting MRCPs to monitor his progression because

he has not needed stenting in a while after having had his second

sphincterotmy. His strictures were in his common bile duct, so the big

opening has helped his bile flow (for now at least)

MRCPs used to be considered not as acurate but from what I have read

are now as effective in monitoring progress and an ERCP can always be

done afterwards too.

Lori

lucky mom blessed with wonderfully wild 10 year old triplets

[Guest guest]

My son has had 15 ERCPs because of stictures/stones/sludge. He had a

series of dilations and then stents replaced regularly. He had MRCPs

initially that diagnosed the stones and inbetween his first several

ERCPs. He will now be getting MRCPs to monitor his progression because

he has not needed stenting in a while after having had his second

sphincterotmy. His strictures were in his common bile duct, so the big

opening has helped his bile flow (for now at least)

MRCPs used to be considered not as acurate but from what I have read

are now as effective in monitoring progress and an ERCP can always be

done afterwards too.

Lori

lucky mom blessed with wonderfully wild 10 year old triplets