Diagnosis

[Guest guest]

Since I still consider us somewhat new and also still adjusting to this new way of life I wanted to ask a question that I can seem to answer myself. How important is it to have a confirmed diagnosis in treating PSC? It's been a year and after 3 biopsies and labs every 2 weeks we are being told right now Caity's diagnosis is inconclusive. The first biopsy showed strong AIH with some PSC, the second PSC with some AIH and the third strong AIH with some PSC. Her ALT/AST and DIR. BILI are slowly increasing every 2 weeks and she is currently high on all three. Her albumin is also decreasing and she is currently low on the range. All of her other labs are in line. Our last clinic visit we were told that Caity definitely has a liver disease not confirmed what it is but we are treating the possibilities. She is currently on 4mg pred., 1000mg Cellcept, 1800mg Urso,

multivitamin, calcium/D, and fish oil. I really don't want her to have an ERCP until symptoms arise and right now she is asymptomatic(except for being very pale and overly tired). Are we doing the right thing by treating what we think she has or is it time to move on and have further testing done to have a definite diagnosis? Thanks for any info. mom to Caity(16) AIH/PSC overlap 7/06

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[Guest guest]

,

I would definitely have the ERCP. The " eyes-on " technology is the

gold-standard for PSC diagnosis; the procedure is extremely beneficial

in providing the patient with a unique image of their diagnosis. This

is critical in mapping your daughter's strategy.

My husband had (2) ERCPs within three months (2005). The first was as

a diagnostic. At that time, an unsuspected, nearly closed duct was

discovered and a french stent was put in to facilitate bile transfer.

The second ERCP was to remove the stent and ultimately served as a

therapeutic procedure as the stent was removed and did not have to be

replaced. Marc had zero problems with either ERCP, was working-out the

next day and we jokingly refer to it as our " procedure of choice " .

Marc is asymptomatic and has always been. He is on high-dose URSO and

all numbers are in normal range. He was diagnosed when a liver panel

came back high during an annual physical.

You need to know exactly what is going on. The ERCP can provide this

information. Don't waste time wondering; get the picture and sculpt

your battle plan!

Best wishes,

Marci

Wife of Marc (PSC, 2005)

[Guest guest]

,

I understand that you are concerned about the invasiveness of the ERCP. I think issues such as pacreatitis have two main components.

a) The experience of the Dr. performing the ERCP.

If they have to manipulate the ducts leaving pancreas.

When I was about to go for my ERCP I was very concerned and some very nice members of the group advised me to make a list of my concerns and address them to my hepatologist. Of my main concers we Pancreatitis and damaging the liver. My hepatologist explained to me that the Dr. performing the ERCP performs approximately two to four procedures every Tuesday, and that from all his referals there were never any problems it relaxed me very much. During every procedure there is a anesthesiologist present, and I can tell you that I usually return to work the afternoon of the procedure.

Good Luck!

Shaul

PCS UC

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[Guest guest]

>

> > I would definitely have the ERCP. The " eyes-on " technology is the

> gold-standard for PSC diagnosis; the procedure is extremely beneficial

> in providing the patient with a unique image of their diagnosis. This

> is critical in mapping your daughter's strategy.

>

Marci,

Thanks for your response....it does give me more insight on what we

should be thinking of doing. I think deep down I know we need to know

what is exactly going on with Caity but on the other hand I'm scared

and don't want to put her through anymore tests and procedures that are

not absolutely neccesary. I have heard of and read so many different

outcomes from having an ERCP done. Some have absolutely no problems

like your husband while others develop pancreatitis and other

complications. I agree, mapping a strategy is key in dealing with this

disease...I am still questioning how to get there.

mom to Caity AIH/PSC overlap 7/06

[Guest guest]

Nina, Caity's doctors take the same stand as your husband and his Hep. More tests would confirm a diagnosis but why do the tests since we are treating the PSC and AIH whether confirmed or not. For me this is hard since I prefer to put a definite name on the disease we are dealing with so I can totally focus on it and hit it head on. But again, I don't want to put her through anymore than she has to go through. My only and biggest fear is that someday I may look back and say "We should have checked that or had that procedure done". It's very hard. Thanks again for your response....my best to you and your husband, mom to Caity(16) PSC/AIH 7/06

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[Guest guest]

,

Would an MRCP be helpful

instead of the ERCP…non-invasive vs. invasive? I agree with you

about invasive procedures. If the plan of attack will not change then why

bother.

Joanne

(mom of Todd)

..

[Guest guest]

,On diagnosis my son had US, MRCP and ERCP without any problems.He had the ERCP because the other test were not conclusive and before starting any treatment we wanted a diagnosis.If the test already done point to PSC/AIH then you already have a treatment course. Still I would contact MAYO and ask these questions and I think they will help you to decide whether or not an ERCP is necessary.If by any chance you can come to Denver April 12th, this would be really helpful as the experts will be there to answer just this type of question.Three pediatrician hepatologist will have a question/ answer session and as well one of them will be presenting.Since she is 16 and on the brink of becoming an adult , there will also be adult hepatoligist that you could also ask questions of.For my son, our plan will include US, MRCP and blood test to monitor his disease and ERCP only if it is needed therapeutically.I really hope to see some of the newly diagnosed people at the conference, it helped me so much when Bill was diagnosed.Take care,Lee mother of Bill 24 PSC/UC 06/04 J-pouch 06/05.Nina, Caity's doctors take the same stand as your husband and his Hep.  More tests would confirm a diagnosis but why do the tests since we are treating the PSC and AIH whether confirmed or not.  

[Guest guest]

Yeah, I would say go for the ERCP.

I had one to diagnosis my PSC and then two more to " clean-out " the

ducts. During that six month period I had 2-3 attacks - brief

infections, but felt okay otherwise. After the final ERCP in Jan

2006, I've been 100% asymptomactic. While this might not be the same

experience your daughter has, it was very useful as a diagnostic and

treatment approach for me.

Berry

Washington, DC

>

> Since I still consider us somewhat new and also still adjusting to

this new way of life I wanted to ask a question that I can seem to

answer myself.

>

> How important is it to have a confirmed diagnosis in treating

PSC?

>

> It's been a year and after 3 biopsies and labs every 2 weeks we

are being told right now Caity's diagnosis is inconclusive. The

first biopsy showed strong AIH with some PSC, the second PSC with

some AIH and the third strong AIH with some PSC. Her ALT/AST and

DIR. BILI are slowly increasing every 2 weeks and she is currently

high on all three. Her albumin is also decreasing and she is

currently low on the range. All of her other labs are in line. Our

last clinic visit we were told that Caity definitely has a liver

disease not confirmed what it is but we are treating the

possibilities. She is currently on 4mg pred., 1000mg Cellcept,

1800mg Urso, multivitamin, calcium/D, and fish oil. I really don't

want her to have an ERCP until symptoms arise and right now she is

asymptomatic(except for being very pale and overly tired). Are we

doing the right thing by treating what we think she has or is it

time to move on and have further testing done to have a definite

diagnosis?

> Thanks for any info.

>

>

> mom to Caity(16) AIH/PSC overlap 7/06

>

>

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

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> Browse Top Cars by " Green Rating " at Yahoo! Autos' Green Center.

>

[Guest guest]

,

My son got suddenly sick with a liver disease in July 2003 when he

was 6 years old. It was first called PSC because the symptoms and the

bloodwork seemed to indicate that. The biopsy did not confirm it

though. His medication was tapered but the liver enzymes got worse.

Then our doctor suddendly decided that the disease is AIH because

(according to her) it was not confirmed as PSC and because AIH is a

better diagnosis and because both diseases would have been treated

the same way anyway. She wanted to have another biopsy but I said no,

and I I asked her to schedule an MRI. She agreed and the MRI showed

that the bile ducts were already dilated (is that the correct word)

and the gall bladder was too big for my son's size. Inspite of that

the diagnosis stayed at AIH. This was about six months after the my

son fell ill. In the spring another biopsy was scheduled but that

confirmed nothing. It was, I guess, half a year or more later that

also an ultrasound showed the same bile duct changes that the

diagnosis went back to PSC. Now the bile duct changes have been seen

to increase in the two MRI scans that have been performed since then,

and they are definitely typical to PSC. We have been told that an

ERCP will only be scheduled if the MRI shows strictures in teh bile

ducts.

For me the time not knowing the diagnosis was tough, too. I thought

it is better to know for sure what we are up against. If it had been

AIH or thought to be AIH, I guess my son would have had to have more

biopsies. Now it seems they are not necessary, and the MRI is not

difficult for him (no claustrofobia).

I don't know if this helps you in any way but I just remembered the

time when I felt exactly like you. I wish all the best to Caity and

hope that her disease responds to treatment well whatever the

diagnosis is in the end. My son has been a lot better (more stabile)

since he was put on azathioprine although I am aware it might not be

a medication he can take 'for ever'.

Taru-Mari, mom to Eemeli (10), PSC 07/2003

[Guest guest]

,

I agree with Marci. ERCP is the best tool

to get a definitive answer. In addition, since the lab work seems to show that

there is some kind of blockage, something can be done to improve that as well.

I had five ERCPs so far, never had any problem. I definitely do not like ERCPs,

but I always feel better after one. I would call it a necessary evil. If you

decide to go for it, make sure you get someone who does this often, it really

makes a difference.

Chaim Boermeester, Israel