RE: Re: question about the itching again

[Guest guest]

Thanks for sharing your feelings Deb. I will save this post for a day

when my son might want to read it.

Lee

>

>

> Dear ,

> Since I'm " stage four, " I suppose I'm in as good a position as anyone

> to answer your question about how it feels to get sicker with PSC.

> Let me say this, though, the stages don't always correlate with time

> to transplant or how sick one feels. The stages just describe what is

> happening to the cells in a piece of the liver taken on biopsy. You

> can feel better or worse depending on how much of your liver is

> affected. In fact, our disease is one of the ones that works in

> sections where you can have healthy tissue right next to diseased

> tissue. That's why ERCP remains the gold standard for diagnosis -

> because you only get 1 50,000th of the liver at biopsy, and it could

> be a healthy piece.

[Guest guest]

Thankyou deb,

I agree, I fear more what lies ahead than "what is". It's very helpfull although to hear from someone who has lived with psc for awhile than others who have just learned through books(doctors, moms friends etc.) I am definitly on my way to finding a new doctor. I should have had an ercp, if thats tha case "disease it works in sections". I was not aware of that. LIve and learn.

heather in ohioDeb wrote:

Dear ,Since I'm "stage four," I suppose I'm in as good a position as anyone to answer your question about how it feels to get sicker with PSC. Let me say this, though, the stages don't always correlate with time to transplant or how sick one feels. The stages just describe what is happening to the cells in a piece of the liver taken on biopsy. You can feel better or worse depending on how much of your liver is affected. In fact, our disease is one of the ones that works in sections where you can have healthy tissue right next to diseased tissue. That's why ERCP remains the gold standard for diagnosis - because you only get 1 50,000th of the liver at biopsy, and it could be a healthy piece.The nice (and sometimes frustrating) thing about this disease is that its progression isn't entirely linear. You may have an

increase in itching for a while, then it could go away. Then, you may be a-symptomatic for a while. Then, you may have a blockage or a cholangitis attack or increased fatigue. I've found that especially early on in the disease, it was rare for all of the symptoms to hit at once unless I had a major blockage and needed an ERCP. Once I'd had the ERCP, I could again slip into a period of feeling well. These times of good health allowed me months of denial where I could pretend I wasn't sick and live my life more normally. ly, that was wonderful, and as long as you keep up with your doctor's appointments, I highly recommend that attitude when you're feeling good. ENJOY life! As many of our members will attest - you can get into one of these periods and stay there for years upon years without needing a transplant.During those better times, I made the most of my good health even though I think the disease was progressing

under the radar all along. That's why my doctor has always monitored my labs at least quarterly to keep an eye on things so we could catch them before they became big deals. It has been seven years since I was diagnosed, and about 15 since I recall my first bought of fatigue, so it really has taken a long time to wreck my liver. I sometimes think if we could have caught the disease sooner, and I could have been medicated for the repeated cholangitis attacks more quickly, things might not have progressed so far so fast, but that's merely conjecture.Now that I have full-blown cirrhosis, I don't get any breaks from PSC. So far, I've been luckier than some in the group - no ascites or varicies, but I have had encephalopathy take up residence. The fatigue is much worse, the itching is intolerable (I have lots of scabs from where I've scratched myself bloody), and I'm a deep color yellow. All this said, I still manage a few hours

of enjoyment out of almost every day. There are drugs that help manage just about every aspect of this part of the disease - they aren't perfect and they don't take the symptoms away entirely, but they do make it easier. I've found that as I got sicker, I also had more experience with how my body reacts to things and how I do mentally with different situations (hospital visits, doctors visits, cholangitis attacks, etc.) so I've been able to adjust to each new level of normal.I think that early on in the disease it is more scary to think about what's coming than what is. I never would have believed it, but by the time you get where I am, you find that you're able to handle it. That's not to say that I don't have my down moments - believe me, I do. Yet, overall, I feel happier than I did years ago when all of this was new to me. Now that I know people who have lived with ascities, varicies, and encephalopathy, I'm not as

fearful of them as I once was. I know that with a positive attitude, hope, and a little luck, I can get better.This is getting long, but I hope that the main thing you'll gleen from this is that it'll be all right no matter how your disease behaves. As you notice symptoms, report them to your doctor, and deal with each one as it appears. Manage the disease, but try not to let the disease manage you - I so hope this helps. I wish I'd heard from someone on the other side of the spectrum when I'd first been diagnosed. Hang in there and ask for the itch remedies - cholestyramine, rifampin, and others can help. Deb in VAPSC 1998, UC 1999, Listed Ltx 2001, HE 1/2005, MELD 20__________________________________________________

[Guest guest]

thanks bill, I'm going to pick up some benedryl right now. I was awake most of the night with the itches untill I ate an Ambien to force myself to sleep through it.

in ohiogmoobad wrote:

,I'm with Tim. You're not crazy and your Mom should trade places withyou for a couple days just for the experience. For those of us thatitch, there's just no way to describe it to someone. I tell peopleit's like having liquid sandpaper in your veins.There are lots of medications available to try to alleviate theitching. You can start with just OTC Benadryl and go on from there. The trick is to keep trying things until you find something that givesa little relief. Don't give up and don't let anyone tell you it's allin your head either.Peace,Bill WisePSC '00, Listed Tx 11/04__________________________________________________

[Guest guest]

Deb, thank

you so much for sharing this with us. It really helped me. Sam

PSC 2001,

listed 03 and 04

-----Original

Message-----

From: Deb

Sent: Sunday, April 03, 2005 12:16

PM

To:

Subject: Re:

question about the itching again

Dear ,

Since I'm " stage four, " I suppose I'm in as good a position as

anyone

to answer your question about how it feels to get sicker with PSC.

Let me say this, though, the stages don't always correlate with time

to transplant or how sick one feels. The stages just describe what is

happening to the cells in a piece of the liver taken on biopsy. You

can feel better or worse depending on how much of your liver is

affected. In fact, our disease is one of the ones that works in

sections where you can have healthy tissue right next to diseased

tissue. That's why ERCP remains the gold standard for diagnosis -

because you only get 1 50,000th of the liver at biopsy, and it could

be a healthy piece.

The nice (and sometimes frustrating) thing about this disease is that

its progression isn't entirely linear. You may have an increase in

itching for a while, then it could go away. Then, you may be a-

symptomatic for a while. Then, you may have a blockage or a

cholangitis attack or increased fatigue. I've found that especially

early on in the disease, it was rare for all of the symptoms to hit

at once unless I had a major blockage and needed an ERCP. Once I'd

had the ERCP, I could again slip into a period of feeling well. These

times of good health allowed me months of denial where I could

pretend I wasn't sick and live my life more normally. ly, that

was wonderful, and as long as you keep up with your doctor's

appointments, I highly recommend that attitude when you're feeling

good. ENJOY life! As many of our members will attest - you can get

into one of these periods and stay there for years upon years without

needing a transplant.

During those better times, I made the most of my good health even

though I think the disease was progressing under the radar all along.

That's why my doctor has always monitored my labs at least quarterly

to keep an eye on things so we could catch them before they became

big deals. It has been seven years since I was diagnosed, and about

15 since I recall my first bought of fatigue, so it really has taken

a long time to wreck my liver. I sometimes think if we could have

caught the disease sooner, and I could have been medicated for the

repeated cholangitis attacks more quickly, things might not have

progressed so far so fast, but that's merely conjecture.

Now that I have full-blown cirrhosis, I don't get any breaks from

PSC. So far, I've been luckier than some in the group - no ascites or

varicies, but I have had encephalopathy take up residence. The

fatigue is much worse, the itching is intolerable (I have lots of

scabs from where I've scratched myself bloody), and I'm a deep color

yellow. All this said, I still manage a few hours of enjoyment out of

almost every day. There are drugs that help manage just about every

aspect of this part of the disease - they aren't perfect and they

don't take the symptoms away entirely, but they do make it easier.

I've found that as I got sicker, I also had more experience with how

my body reacts to things and how I do mentally with different

situations (hospital visits, doctors visits, cholangitis attacks,

etc.) so I've been able to adjust to each new level of normal.

I think that early on in the disease it is more scary to think about

what's coming than what is. I never would have believed it, but by

the time you get where I am, you find that you're able to handle it.

That's not to say that I don't have my down moments - believe me, I

do. Yet, overall, I feel happier than I did years ago when all of

this was new to me. Now that I know people who have lived with

ascities, varicies, and encephalopathy, I'm not as fearful of them as

I once was. I know that with a positive attitude, hope, and a little

luck, I can get better.

This is getting long, but I hope that the main thing you'll gleen

from this is that it'll be all right no matter how your disease

behaves. As you notice symptoms, report them to your doctor, and deal

with each one as it appears. Manage the disease, but try not to let

the disease manage you -

I so hope this helps. I wish I'd heard from someone on the other side

of the spectrum when I'd first been diagnosed.

Hang in there and ask for the itch remedies - cholestyramine,

rifampin, and others can help.

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, HE 1/2005, MELD 20