New to the group and PSC.

[Guest guest]

Hi,

I have just been diagnosed with PSC and wanted to join the group.

I have had a few weeks to absorb the fact that I probably have it,

and have done as much research as possible. I'm still pretty scared

and unsure but much better than a few weeks ago.

A little about me: I am 34, married and have 3 kids 19mons, 7 and

8. I work as an RN. I was diagnosed with UC in 2002 after becoming

real sick, but have not had many problems after geeting that intial

sickness under control. About 1 month ago I woke up to very severe

pain around my liver and went to the ER. They drew liver enzymes,

that came back very elevated, so after several tests I was told it

was probably PSC. MY CT scan shows intrahepatic ductal dilation and

a prominent spleen. My liver enzymes are still high with my Alk.

phos being around 500. I'm going to start on Urso tomorrow.

My questions are, How fast can the urso work to lower the liver

enzymes? and when/if my liver enzymes come down will that help with

the horrible fatigue I have? Will it help with the horrible

itching? I can't stand either.

Also, any other things I should ask for from my Dr. or advice would

be great.

Thank you, (sorry this is so long)

Sands

[Guest guest]

,

I am sorry to hear about your diagnose

with PSC, but I am happy you found us. This group is a bunch of very warm, helpful

and knowledgeable people. This group has helped through some difficult times.

First of all, don't believe everything you

read on the internet, and don't think you are going to die. A lot of research

that is on the internet is outdated. Some things have happened that make me

feel that things are getting better. There is no research to proof that, because

the high dose urso is not yet long enough in practice to do reliable research

with. One of the leading PSC doctors in the world (Dr. Chapman in England) now

says that most PSC patients will now die with PSC, instead of from PSC. Another

nice tidbit is that a rich Norwegian has donated $18.5 million dollars last

week for research in PSC.

About your questions:

The problem with PSC is that it is a very

individual disease, and even within an individual there are times that it

progresses faster than other times. Most of the people here tolerate Urso well and

take between 25-30 mg/kilo of body weight. This is the dose that is recommended

at this time. For most people urso brings the LFTs down, there even are people

here (like me) who have normal LFTs. I don't have experience with fatigue or

itching, but it sounds reasonable that if your bile starts flowing better due

to the Urso that the itching will be less. The cause for fatigue is not yet

understood, so it is hard to say if the Urso will help you with it. I started

taking Urso right after a balloon dilatation during ERCP, so I can't tell you

how long it takes for Urso to bring down your LFTs. But I am sure somebody here

will have an answer for you.

Please note that I am not a doctor but

just a patient who has read and learned through this forum.

In addition to LFTs please ask the doctor

for regular checks for CEA and CA19-9. It is also advised to perform regular

ultrasounds of the abdomen and a bone density test. It is also a good idea to

start taking vitamin A, D, E and K.

I am sure others here can come up with

more.

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of jennielou33

Sent: Tuesday, November 27, 2007

06:28

To:

Subject: New to the

group and PSC.

Hi,

I have just been diagnosed with PSC and wanted to join the group.

I have had a few weeks to absorb the fact that I probably have it,

and have done as much research as possible. I'm still pretty scared

and unsure but much better than a few weeks ago.

A little about me: I am 34, married and have 3 kids 19mons, 7 and

8. I work as an RN. I was diagnosed with UC in 2002 after becoming

real sick, but have not had many problems after geeting that intial

sickness under control. About 1 month ago I woke up to very severe

pain around my liver and went to the ER. They drew liver enzymes,

that came back very elevated, so after several tests I was told it

was probably PSC. MY CT scan shows intrahepatic ductal dilation and

a prominent spleen. My liver enzymes are still high with my Alk.

phos being around 500. I'm going to start on Urso tomorrow.

My questions are, How fast can the urso work to lower the liver

enzymes? and when/if my liver enzymes come down will that help with

the horrible fatigue I have? Will it help with the horrible

itching? I can't stand either.

Also, any other things I should ask for from my Dr. or advice would

be great.

Thank you, (sorry this is so long)

Sands

[Guest guest]

Hi ,So sorry to hear about your diagnosis, but you have found the right place to learn about the disease and what you can do about it to be a proactive patient. You might want to also check the American Liver Foundation web site on Google, and see if there's a Liver support group in your area. Most liver diseases have similar symptoms, and many lead to the eventual need for a transplant, so a Liver Support group can be invaluable, along with this group. It is also hopeful, since you will probably meet liver transplant recipients who are leading normal lives - I found that to be at first scary, but eventually very hopeful.If you're like most, you'll go through several phases with this disease. Right now you can start by learning to be a good patient who asks questions, reads, and is compliant (discusses the course of action with the doctor, then complies with the doctor's strategy & advice). The first advice I got from a liver tx recipient was that compliance is very important if you need a new liver and hope to get one. There's a big shortage of livers for transplant, so the liver transplant team is very picky about who gets a liver - one big element is a patient who is compliant and will take care of a new liver and can follow doctor's orders and take needed meds. The liver transplant patient always gets approval from the doc before taking any medicine, even if it's herbal or otherwise over-the-counter. So it's good advice to follow pre-transplant (and hopefully a transplant is years away for you).Another thing to start doing is to keep your own medical records: get copies of ALL test results, including blood tests, CT scan reports, biopsies, etc. Create a notebook and keep it going. I also created a word document of my medical history, my medical record number, all the meds I take and the dosage (including OTC), emergency numbers, pharmacy number, doctors names & phone numbers. I always carry a copy in my purse. It's very helpful when you go to the doctor, urgent care or the ER.As to questions to ask: I would ask if you should have an ERCP test and a liver biopsy to stage the PSC. I would also ask if you should be on ursodiol/actigal. Ask to have your Vitamin A level checked. Ask to have your CA-19-9 and alpha fetoprotein checked (the last 2 are tumor markers for the bile ducts & liver).If possible, have your blood drawn a week before you see the doctor so that the results are in when you do see the doctor. This will give you more to talk about, and the doctor can better treat you.Also ask what your MELD score is. You can calculate the MELD score yourself at the following web site:http://www.unos.org/resources/MeldPeldCalculator.asp?index=98Transplant facilities vary, but when your MELD score is about 10-15 you may be evaluated to see if you can be listed for a transplant. Depending on where you live, once listed the wait can be a few weeks to years.You'll be having a lot of symptoms and some strange things will be happening to your body, and a lot of those things won't be necessarily life threatening. You can function on 30% of your liver. Once only 30% of your liver is working you run into serious trouble, and it's time to think of a transplant. Things to really be concerned about are jaundice; fatigue + fever; blurry thinking & confusion. Hopefully you're a long way off from that. Brown urine is also something serious.Okay, now for something more upbeat: chances are excellent that you'll live many years with no symptoms or few symptoms before you'll need a transplant. And there's a chance you'll never need a transplant. But it's better to plan for the worst and hope for the best, and try to be a realist about it. Once you've done your planning, you can push PSC to the back of your head and live your life.Marie

To: From: jennielou33@...Date: Tue, 27 Nov 2007 04:28:03 +0000Subject: New to the group and PSC.

Hi,

I have just been diagnosed with PSC and wanted to join the group.

I have had a few weeks to absorb the fact that I probably have it,

and have done as much research as possible. I'm still pretty scared

and unsure but much better than a few weeks ago.

A little about me: I am 34, married and have 3 kids 19mons, 7 and

8. I work as an RN. I was diagnosed with UC in 2002 after becoming

real sick, but have not had many problems after geeting that intial

sickness under control. About 1 month ago I woke up to very severe

pain around my liver and went to the ER. They drew liver enzymes,

that came back very elevated, so after several tests I was told it

was probably PSC. MY CT scan shows intrahepatic ductal dilation and

a prominent spleen. My liver enzymes are still high with my Alk.

phos being around 500. I'm going to start on Urso tomorrow.

My questions are, How fast can the urso work to lower the liver

enzymes? and when/if my liver enzymes come down will that help with

the horrible fatigue I have? Will it help with the horrible

itching? I can't stand either.

Also, any other things I should ask for from my Dr. or advice would

be great.

Thank you, (sorry this is so long)

Sands

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[Guest guest]

>

>

.. But it's better to plan for the worst and hope for the best, and try

to be a realist about it. Once you've done your planning, you can push

PSC to the back of your head and live your life.

Hi ,

Welcome to our very 'rare' group.

As others have said you will get so much information and support from

the members.

Thanks also Marie. Great words of wisdom, you wrote a very good

introduction to dealing PSC.

[Guest guest]

Hi .

Sorry about the dx but welcome to the group! I'm not sure about URSO

bringing down numbers, mine haven't ever been higher than 200. I'm

lucky in that respect but I still have a terrible time with fatigue

and itching. I also have young children and that's a whole new world

trying to keep up with them, lol.

Again, welcome to the group.

PSC 8/07

PBC 10/06