Re: Had Enough!

[Guest guest]

Debbie,

I am so sorry that you are going through this. I will be praying that you

itching lets up at least enough so that you can handle it.

Prayers, Vicki

Ohio dx 6/99

[Guest guest]

DEbbie,

If I can't sleep due to itching, I just zonk out with benadryl.

Then I'm not sleepless and itching at the same time. See if your

doc thinks it's ok for you to take. Just a suggestion--I know I've

had bouts like yours, but thankfully they didn't last long. I really

hope you get relief soon.

J & D Lynch wrote:

Hello All, It

has been over four weeks of itching now and I can't stand it any more.

I don't know how some of you cope with this but the itching is driving

me crazy. I have been on Questran for a week now and have noticed

no change. I have itching where I thought it was impossible to itch,

my eyes, my head, everywhere. My research nurse said that she has

a number of PSC patients where when they DON'T itch, it's a big deal; that

they itch more often than not. I don't think I can handle that.

I already have large patches of broken blood vessels from scratching and

a number of patches where a rash has developed from scratching. It

is now at the point where some of my clothes are irritating me.Maybe

I'm overreacting because I had very little sleep last night between scratching

and getting up with the baby. I'm just waiting for my GI's office

to open this morning to see if I can get in today (unlikely since specialists

often require several weeks notice for appointments). I can't get

in to see my GP until Friday. I hope I don't go crazy by then. Thanks

for listening, Debbie,

UC(1988), PSC (1989)

eGroups.com home: /group/

www. - Simplifying

group communications

[Guest guest]

Hi Debbie,

I just do not how you do it -- put up with the itching and everything else that goes along with PSC AND raise a child!!!

So far, thank God, I have not had the itching only the severe pain. I guess that horrible itching will come my way one of these days. If and when it does, I will think of you and try not to complain -- as I have always said all you have to do is turn around and you will see someone worse off than you -- and you are much worse than I.

You are indeed an angel in disguise -- maybe you do get mad and tired of this blame itching -- but you still try to find a new way to control it. There have been many people on the site that have given info on what they did and do to control the itching -- meds, etc. Maybe, and they probably have, will let you in on it!!

I see you were diagnosed with this " devil " disease in 1989!!! That in itself is enough to drive one crazy! Are you on a TX list? What were your first symptoms of this disease or did you just happen to find out through blood tests? How many children do you have?

I am a nosey person aren't I? But I am so interested.

Hugs,

Biddy

Had Enough!

Hello All,

It has been over four weeks of itching now and I can't stand it any more. I don't know how some of you cope with this but the itching is driving me crazy. I have been on Questran for a week now and have noticed no change. I have itching where I thought it was impossible to itch, my eyes, my head, everywhere. My research nurse said that she has a number of PSC patients where when they DON'T itch, it's a big deal; that they itch more often than not. I don't think I can handle that. I already have large patches of broken blood vessels from scratching and a number of patches where a rash has developed from scratching. It is now at the point where some of my clothes are irritating me.

Maybe I'm overreacting because I had very little sleep last night between scratching and getting up with the baby. I'm just waiting for my GI's office to open this morning to see if I can get in today (unlikely since specialists often require several weeks notice for appointments). I can't get in to see my GP until Friday. I hope I don't go crazy by then.

Thanks for listening,

Debbie, UC(1988), PSC (1989)

eGroups.com home: /group/www. - Simplifying group communications

[Guest guest]

Hi Biddy,

You're not nosey at all. I don't mind sharing some info since I get so much from everyone else. I was diagnosed in 89 because I was having URQ pain and my doctor thought I had gallstones. An ERCP showed indeed a small stone but also the VERY early beginnings of PSC. I have been on URSO since then. It was at this point that I fessed up to the bowel problems I had been having for over a year and they did the colonoscopy to confirm the UC. I really don't consider myself that bad off. I am really fortunate because I was caught early and have had very little outward symptoms of the PSC. Most of the time life goes on as normal(except for the endless testing that we all endure)!!

I have three children, 8, 4 1/2, 6 weeks all born after my diagnosis. My GI assured me that this was not a hereditary condition and I thought long and hard about having children. I'm thrilled all is well with them. I didn't want to always regret a decision and my choice to have children was one I have no regrets about. Although I have early stage cirrhosis, esophageal varices, and splenomegaly, I am not listed for transplant. My docs believe I still have several years before that will be necessary, unless something should change drastically. PSC is basically a slow moving disease and my doctors believe that my early start on the URSO has allowed me to enjoy such a long time until transplant. Many people live with cirrhosis for many many years and I hope to be one of them.

In the meantime, I am far too busy to think too much about this disease all the time. On top of my kids, I work as a high school teacher so my time is pretty much taken up with all of that(I'm off on maternity leave right now until February and then I'm returning only part time.)

Feel free to let me know if there is anything else I can tell you.

Debbie, UC (1988), PSC (1989)

Ontario

Had Enough!

Hello All,

It has been over four weeks of itching now and I can't stand it any more. I don't know how some of you cope with this but the itching is driving me crazy. I have been on Questran for a week now and have noticed no change. I have itching where I thought it was impossible to itch, my eyes, my head, everywhere. My research nurse said that she has a number of PSC patients where when they DON'T itch, it's a big deal; that they itch more often than not. I don't think I can handle that. I already have large patches of broken blood vessels from scratching and a number of patches where a rash has developed from scratching. It is now at the point where some of my clothes are irritating me.

Maybe I'm overreacting because I had very little sleep last night between scratching and getting up with the baby. I'm just waiting for my GI's office to open this morning to see if I can get in today (unlikely since specialists often require several weeks notice for appointments). I can't get in to see my GP until Friday. I hope I don't go crazy by then.

Thanks for listening,

Debbie, UC(1988), PSC (1989)

eGroups.com home: /group/www. - Simplifying group communications

eGroups.com home: /group/www. - Simplifying group communications

[Guest guest]

Hi Debbie,

I'm glad you're doing so well (except for a major itching

problem - hope that goes away soon). During most of my time with

PSC I felt as you do, it's something you live with and most of

the time doesn't interfer with " normal " life. May be the case

for a long time.

Have any of your test results been interpteted to give you a

marker in the progression of PSC (like the first indicated " VERY

early beginnings " )?

Tim ltx 4/4/98 MI

--- J & D Lynch wrote:

> Hi Biddy,

>

> You're not nosey at all. I don't mind sharing some info since

> I get so much from everyone else. I was diagnosed in 89

> because I was having URQ pain and my doctor thought I had

> gallstones. An ERCP showed indeed a small stone but also the

> VERY early beginnings of PSC. I have been on URSO since then.

> It was at this point that I fessed up to the bowel problems I

> had been having for over a year and they did the colonoscopy

> to confirm the UC. I really don't consider myself that bad

> off. I am really fortunate because I was caught early and

> have had very little outward symptoms of the PSC. Most of the

> time life goes on as normal(except for the endless testing

> that we all endure)!!

>

> I have three children, 8, 4 1/2, 6 weeks all born after my

> diagnosis. My GI assured me that this was not a hereditary

> condition and I thought long and hard about having children.

> I'm thrilled all is well with them. I didn't want to always

> regret a decision and my choice to have children was one I

> have no regrets about. Although I have early stage cirrhosis,

> esophageal varices, and splenomegaly, I am not listed for

> transplant. My docs believe I still have several years before

> that will be necessary, unless something should change

> drastically. PSC is basically a slow moving disease and my

> doctors believe that my early start on the URSO has allowed me

> to enjoy such a long time until transplant. Many people live

> with cirrhosis for many many years and I hope to be one of

> them.

>

> In the meantime, I am far too busy to think too much about

> this disease all the time. On top of my kids, I work as a

> high school teacher so my time is pretty much taken up with

> all of that(I'm off on maternity leave right now until

> February and then I'm returning only part time.)

>

> Feel free to let me know if there is anything else I can tell

> you.

>

> Debbie, UC (1988), PSC (1989)

> Ontario

__________________________________________________

[Guest guest]

Dear Debbie,

I too went through the itching that drove me insane with both of my

pregnancies....My docs tried everything. I couldn't drink the Questran, b/c

1)it didn't really help and 2) it made me too nauseous. Anyway, after about

16 weeks my doc put me on phenobarbital at night and that helped some.

Towards the end of the pregnancy they gave me a strong sleeping pill called

Restoril and Seconal. I was so afraid to take anything that strong but my OB

felt very comfortable with those and said that he had many patients that

required that type of med in the last few months. So, I'm not saying that

those would be ok for you, but it is something to ask your OB about. I'm

sure he's probably tried Tylenol PM??? If not, that's a pretty safe drug too

as it just contains Tylenol and Benadryl...but like I said, run ALL of that

by your doc and don't take my advice.

I will be praying for you!!! I remember those days all too well....just

know that someday post tx, you'll never have to itch again!!! For me that is

one of the biggest benefits of tx!!!

God Bless and keep you!!!

I'm praying and with much love,

Jacquelyn

[Guest guest]

Jacquelyn,

Thanks for the advice. I just phoned MotherRisk which is a

substance/alcohol use in pregnancy and nursing operated by The Hospital for

Sick Children here in Toronto. Many doctors bow to their advice and they

just gave me the OK to take Atarax which is a fairly strong antihistamine.

Hopefully it will work since the Questran did nothing but taste terrible!!

I'm so reluctant to take things because I already took the URSO all

throughout the pregnancy but I guess in order for the baby to stay happy I

have to be well.

Thanks for your prayers.

Debbie

Re: Had Enough!

>Dear Debbie,

> I too went through the itching that drove me insane with both of my

>pregnancies....My docs tried everything. I couldn't drink the Questran,

b/c

>1)it didn't really help and 2) it made me too nauseous. Anyway, after

about

>16 weeks my doc put me on phenobarbital at night and that helped some.

>Towards the end of the pregnancy they gave me a strong sleeping pill called

>Restoril and Seconal. I was so afraid to take anything that strong but my

OB

>felt very comfortable with those and said that he had many patients that

>required that type of med in the last few months. So, I'm not saying that

>those would be ok for you, but it is something to ask your OB about. I'm

>sure he's probably tried Tylenol PM??? If not, that's a pretty safe drug

too

>as it just contains Tylenol and Benadryl...but like I said, run ALL of that

>by your doc and don't take my advice.

> I will be praying for you!!! I remember those days all too well....just

>know that someday post tx, you'll never have to itch again!!! For me that

is

>one of the biggest benefits of tx!!!

> God Bless and keep you!!!

> I'm praying and with much love,

> Jacquelyn

>

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

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>

>

[Guest guest]

Tim,

The URSO keeps most of my blood work within the normal or only slightly

elevated range. The biggest indicator that there was progression and

possibly cirrhosis was the drop in my platelets. The doctors wouldn't have

even known that except I was involved in a study with methotrexate which can

cause lower platelets. However, CT Scans showed that I had an enlarged

spleen, thus the lower platelets. My GI did yet another biopsy after this

point and confirmed the progression of the disease. When I told my GI's I

was considering another child, they went through the risks etc. and that's

when I had a gastroscope to determine the extent of my varices. Fortunately

they were stage 1 (mild with little to no risk of bleeding). Since May 1998

the only tests I've had are bloodtests because of my pregnancy and nursing.

However, the doctors will soon be restarting me on regular visits, CT Scans,

etc. etc. I can't wait!!LOL.

Debbie

Re: Had Enough!

>Hi Debbie,

>I'm glad you're doing so well (except for a major itching

>problem - hope that goes away soon). During most of my time with

>PSC I felt as you do, it's something you live with and most of

>the time doesn't interfer with " normal " life. May be the case

>for a long time.

>

>Have any of your test results been interpteted to give you a

>marker in the progression of PSC (like the first indicated " VERY

>early beginnings " )?

>

>Tim ltx 4/4/98 MI

>

>--- J & D Lynch wrote:

>> Hi Biddy,

>>

>> You're not nosey at all. I don't mind sharing some info since

>> I get so much from everyone else. I was diagnosed in 89

>> because I was having URQ pain and my doctor thought I had

>> gallstones. An ERCP showed indeed a small stone but also the

>> VERY early beginnings of PSC. I have been on URSO since then.

>> It was at this point that I fessed up to the bowel problems I

>> had been having for over a year and they did the colonoscopy

>> to confirm the UC. I really don't consider myself that bad

>> off. I am really fortunate because I was caught early and

>> have had very little outward symptoms of the PSC. Most of the

>> time life goes on as normal(except for the endless testing

>> that we all endure)!!

>>

>> I have three children, 8, 4 1/2, 6 weeks all born after my

>> diagnosis. My GI assured me that this was not a hereditary

>> condition and I thought long and hard about having children.

>> I'm thrilled all is well with them. I didn't want to always

>> regret a decision and my choice to have children was one I

>> have no regrets about. Although I have early stage cirrhosis,

>> esophageal varices, and splenomegaly, I am not listed for

>> transplant. My docs believe I still have several years before

>> that will be necessary, unless something should change

>> drastically. PSC is basically a slow moving disease and my

>> doctors believe that my early start on the URSO has allowed me

>> to enjoy such a long time until transplant. Many people live

>> with cirrhosis for many many years and I hope to be one of

>> them.

>>

>> In the meantime, I am far too busy to think too much about

>> this disease all the time. On top of my kids, I work as a

>> high school teacher so my time is pretty much taken up with

>> all of that(I'm off on maternity leave right now until

>> February and then I'm returning only part time.)

>>

>> Feel free to let me know if there is anything else I can tell

>> you.

>>

>> Debbie, UC (1988), PSC (1989)

>> Ontario

>

>__________________________________________________

>

[Guest guest]

Hi!

Did any of you know that any form of Tylenol is very dangerous to our

livers? That is the biggest no-no with liver disease!!

When my doc found out that I was taking Tylenol now and then for headaches

he went ballistic!! I have known for a long time about Tylenol, but I just

thought it wouldn't hurt now and then.

I think it is very strange for the people with Tylenol not to say in their

advertisements that it may irritate the liver. I have been taking Tylenol

since it first came on the market because it didn't hurt your stomach in

anyway whatsoever -- or so I thought.

Any of you that have taken Tylenol in any form should contact your doc

immediately and I do believe he will tell you to STOP! It has just became

known as " liver killer! " (my name for it). Check around -- it may help with

your liver. After all, the liver is the most incredible part of our body --

if whatever is damaging it, it will rejuvenate itself immediately and then a

new liver forms!!

Hugs,

Biddy

> Re: Had Enough!

>

>

> Dear Debbie,

> I too went through the itching that drove me insane with both of my

> pregnancies....My docs tried everything. I couldn't drink the

> Questran, b/c

> 1)it didn't really help and 2) it made me too nauseous. Anyway,

> after about

> 16 weeks my doc put me on phenobarbital at night and that helped some.

> Towards the end of the pregnancy they gave me a strong sleeping

> pill called

> Restoril and Seconal. I was so afraid to take anything that

> strong but my OB

> felt very comfortable with those and said that he had many patients that

> required that type of med in the last few months. So, I'm not

> saying that

> those would be ok for you, but it is something to ask your OB about. I'm

> sure he's probably tried Tylenol PM??? If not, that's a pretty

> safe drug too

> as it just contains Tylenol and Benadryl...but like I said, run

> ALL of that

> by your doc and don't take my advice.

> I will be praying for you!!! I remember those days all too

> well....just

> know that someday post tx, you'll never have to itch again!!! For

> me that is

> one of the biggest benefits of tx!!!

> God Bless and keep you!!!

> I'm praying and with much love,

> Jacquelyn

>

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

> MyPoints-Free Rewards When You're Online.

> Start with up to 150 Points for joining!

> http://clickhere./click/805

>

>

> eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

>

[Guest guest]

Dear Biddy,

Just thought y'all would get a kick out of this one....upon discharge

from the hospital following the tx...my docs only advice for pain relief WAS

TYLENOL!!! How crazy is that??!! Or maybe I should say...how crazy are

they??!!

Take care,

Jacquelyn

[Guest guest]

are you saying that Celebrax is dangerous for the liver? Should I stop

taking it until I talk to my Dr.?

[Guest guest]

Biddy,

If you are wanting a pain killer that is safe for the liver, try

Ultram, or buffered asperin (since it's coated, it's supposed to be easier on

the stomache). I believe Ultram is processed through the kidneys instead of

the liver. It didn't even get rid of a headache for me...but it's worth a

try.

Love,

[Guest guest]

Tim!

Thanks for the reply. I wonder why post-TX that Tylenol is allowed?

Supposedly it could have caused some of our liver damage in the first place.

Why in the world would they say we could take it and then maybe destroy a

new liver? A very interesting subject.

Hugs,

Biddy

Re: Had Enough!

>You are right Biddy, pre-tx I was told to avoid Tylenol

>(Acetaminophen). But post-tx it is the only over-the-counter

>pain medication allowed.

>Tim ltx 4/4/98

>

>--- Biddy Santon wrote:

>> Hi!

>> Did any of you know that any form of Tylenol is very

>> dangerous to our

>> livers? That is the biggest no-no with liver disease!!

>> When my doc found out that I was taking Tylenol now and then

>> for headaches

>> he went ballistic!! I have known for a long time about

>> Tylenol, but I just

>> thought it wouldn't hurt now and then.

>> I think it is very strange for the people with Tylenol not to

>> say in their

>> advertisements that it may irritate the liver. I have been

>> taking Tylenol

>> since it first came on the market because it didn't hurt your

>> stomach in

>> anyway whatsoever -- or so I thought.

>> Any of you that have taken Tylenol in any form should contact

>> your doc

>> immediately and I do believe he will tell you to STOP! It has

>> just became

>> known as " liver killer! " (my name for it). Check around -- it

>> may help with

>> your liver. After all, the liver is the most incredible part

>> of our body --

>> if whatever is damaging it, it will rejuvenate itself

>> immediately and then a

>> new liver forms!!

>> Hugs,

>> Biddy

>

>__________________________________________________

>

[Guest guest]

Hi !

You know that everything you say I take to heart and thus, probably my

docs are wrong. But I have read several articles in medical journals about

this -- they say that they can't prove it about Tylenol in PSC as so many

factors are involved. But the advise that people with liver disease to stay

away from Tylenol. Now since my ulcers, I cannot take Aleve! Go figure.

Hugs,

Biddy

Re: Had Enough!

>My Dr. has told me to take tylenol. Actually he prescribed Tylenol 3 with

>codiene for me for my URQ pain. Needless to say, I very rarely took it,

and

>I'm now on celebrax (anti-inflammatory) in hopes that it will make the

>inflammation in my liver go down.

>Love,

>

>

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

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>Productopia has the answers.

>http://clickhere./click/555

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> - Simplifying group communications

>

>

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>

>

[Guest guest]

Penny,

One thing I have noticed on our website is that most of us don't know

what to take and not to take, what to do and what not to do.

I also developed osteoarthritis and now my fingers are beginning to get

huge " knots " but only on the joints closest to the fingernail. It is

affecting my knees and back tremendously, but I have just decided not to do

anything about it. This is just another thing I haven't told my doctors. I

just do not, in anyway, trust them!

I guess we are their guinea pigs LOL!

I am going to start trying to cure the ailments that arise with this

" devil " disease, because the ailments are coming so fast I cannot keep up

with them.

Hugs,

Biddy

Re: Had Enough!

>Hi,

>Someone in another group that I am in has drug induced hep (from

methotrexate)

>and also has arthritis...she is taking celebrex and is constantly monitored

for

>LFTs. My internist and I discussed celebrex too for my joint pains/fibro

and

>she decided it was too risky for me (look at the drug insert or check a NEW

>PDR).

>Penny

>

>WYBEAR21@... wrote:

>

>> My Dr. has told me to take tylenol. Actually he prescribed Tylenol 3

with

>> codiene for me for my URQ pain. Needless to say, I very rarely took it,

and

>> I'm now on celebrax (anti-inflammatory) in hopes that it will make the

>> inflammation in my liver go down.

>> Love,

>>

>>

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

>> Was the salesman clueless?

>> Productopia has the answers.

>> http://clickhere./click/555

>>

>> eGroups.com home: /group/

>> - Simplifying group communications

>

>

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

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>

>

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> - Simplifying group communications

>

>

>

>

>

[Guest guest]

Hi!

Do you have ANY idea how good it is to see you posting again? I have

missed reading your replies or anything you post -- goodness gracious I am

so very happy!!

I know about the docs -- but I am surprised about the Tx -- guess that

Tylenol is OK.

I had a headache at Duke and my doctor told his nurse to get me some

headache medicine -- I asked for Aleve. Guess what? I also got Tylenol!!! I

was astonished, so that just convinced me that the " great " doctor (head of

the liver dept.) just doesn't pay attention and never has. I still didn't

take it until recently and now I am going to stay with it because it is the

only over-the-counter medicine that helps my headaches!

Let's hear it for my doctor!!!

Hugs,

Biddy

P.S. You know the confusion they talked about as one of the symptoms, I

believe they know when it is bad and they tell you anything. I am telling

you one thing the " brain fog " doesn't help in my case -- I do believe I am

completely gone. Did my society column again and my hubby proofed it -- it

was horrible!!! I can no longer write hardly anything that makes sense and

he had to correct so much of my column -- that NEVER happened before. I

could write pretty good although I was never trained in that field! Now, I

just should quit trying to make any stabs at writing a column that everyone

around here reads!

Re: Had Enough!

>Dear Biddy,

> Just thought y'all would get a kick out of this one....upon discharge

>from the hospital following the tx...my docs only advice for pain relief

WAS

>TYLENOL!!! How crazy is that??!! Or maybe I should say...how crazy are

>they??!!

> Take care,

> Jacquelyn

>

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

>Was the salesman clueless?

>Productopia has the answers.

>http://clickhere./click/555

>

>

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

>

[Guest guest]

Hi Liz!!

Are you also a nurse? That is great! I think we have three RN's on this

site now -- maybe I dreamed it. Now I feel I can get some more answers to

the many questions that come up -- you know, I am sure, that we have some

pretty sharp people that know a LOT about PSC on this site. Thank God for me

because " I know nothing. "

Yes I knew about the acetaminophen, but Percodan has aspirin or whatever

the aspirin is called. I was given a few pills of oxycontin (this is

probably spelled wrong) and it put me in orbit! I was going around like the

wild woman I used to be -- nothing hurt and I had energy for 8 people. Of

course after the med wore off I was in BIG trouble -- the whole 9 yards!!

Hugs,

Biddy

Re: Had Enough!

>Biddy- I believe that I read that you are taking Percocet for pain.

>Percocet is a combo of oxycodone and acetaminophen, which is tylenol. Just

>thought you might want to know that, maybe that is the reason why your doc

>doesn't want you to take any additional tylenol? Liz

>

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[Guest guest]

Penny,

I would suggest you get one of the Leaky Gut tapes and get it to your friend.

It talks about Methotrexate and how it is prescribed for arthritis and

sometimes just makes it worse.

Larry

[Guest guest]

Biddy, yes I am an RN but had no experience with PSC until my husband was

diagnosed this year. I am learning alot myself by reading the postings about

the experiences of the members who have the disease and their caregivers like

myself. My nursing experience is helpful in understanding the facts about

the disease and the liver, and about meds and symptoms etc. but nothing can

prepare you when someone you love gets an unexpected and baffling disease

such as this. You try to figure out how it happened. In my husband's case,

he worked on tugs and barges for 15 years, hauling gasoline for Mobil Oil. I

tend to believe that inhaling alot of fumes and toxins had to have something

to do with this, as they can affect the liver. The doc says maybe, maybe

not. I guess we will never know. Have a good day, hope you are feeling

better with your pain today. Liz

[Guest guest]

Hi Liz!

Thank you so very much for caring. That means so much as you must know.

I have always said that this disease is much harder on family and

friends than it is on us.

Actually I am feeling better -- yesterday and today!!! I am so excited,

wouldn't it be incredible if I were cured?

Hugs,

Biddy

P.S. Would you mind posting about how your husband first had any idea he had

liver problems and what were his symptoms. What are his symptoms now? I have

a poll going just in case it might help doctors in understanding our

disease. It can't hurt and it just might help -- or at least I hope so.

Re: Had Enough!

>Biddy, yes I am an RN but had no experience with PSC until my husband was

>diagnosed this year. I am learning alot myself by reading the postings

about

>the experiences of the members who have the disease and their caregivers

like

>myself. My nursing experience is helpful in understanding the facts about

>the disease and the liver, and about meds and symptoms etc. but nothing can

>prepare you when someone you love gets an unexpected and baffling disease

>such as this. You try to figure out how it happened. In my husband's

case,

>he worked on tugs and barges for 15 years, hauling gasoline for Mobil Oil.

I

>tend to believe that inhaling alot of fumes and toxins had to have

something

>to do with this, as they can affect the liver. The doc says maybe, maybe

>not. I guess we will never know. Have a good day, hope you are feeling

>better with your pain today. Liz

>

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[Guest guest]

Biddy, my husband first became aware of a problem when routine bloodwork

turned up elevated LFTs. His only complaint at that time was occasional GI

distress after a heavy meal, which was attributed to the fact that he had a

gallbladder full of stones. These symptoms disappeared after he had his

gallbladder out, so I guess it had nothing to do with the PSC. I wonder

however, if the stones were related to a problem with bile flow. That is

pretty probable, I guess. He is completely symptom free at present. He has

not yet had any of the physical manifestations of the disease, like jaundice,

itching, cholangitis, or fatigue. He is in great shape, works really hard

and feels great. Who knows how long this will last. He had a strange rash

about a year and a half ago on his arms, but that is gone too, and I have no

idea if it was connected to the liver problem, but I wouldn't be surprised.

It was not too itchy though. Anyway, thats our story! Liz

[Guest guest]

Liz and all,

You just reminded me, that every once in a while I break out in a rash,

mostly on my trunk and upper thighs. I have no idea what it is, but it has

happened about 3 times over the years. It is always the same. Red raised and

very itchy. The doctor doesn't know what it is from. They always ask if I

changed detergent or soaps ect. And I don't. Anyway just thought I would

share about the strange rash.

Vicki 38 dx PSC 6/99 Ohio

[Guest guest]

Hi Liz!

Thanks so much for your posting! Yours also is a very interesting

story -- completely different than anyone so far.

When was your husband diagnosed? You both are so very lucky that he has

no major symptoms -- yet. Just maybe he may be the first one with PSC that

has had a complete reversal. Wouldn't that be great -- not just for you

both, but to give all of us with PSC hope!!

Thank you.

Hugs,

Biddy

Re: Had Enough!

>Biddy, my husband first became aware of a problem when routine bloodwork

>turned up elevated LFTs. His only complaint at that time was occasional GI

>distress after a heavy meal, which was attributed to the fact that he had a

>gallbladder full of stones. These symptoms disappeared after he had his

>gallbladder out, so I guess it had nothing to do with the PSC. I wonder

>however, if the stones were related to a problem with bile flow. That is

>pretty probable, I guess. He is completely symptom free at present. He has

>not yet had any of the physical manifestations of the disease, like

jaundice,

>itching, cholangitis, or fatigue. He is in great shape, works really hard

>and feels great. Who knows how long this will last. He had a strange rash

>about a year and a half ago on his arms, but that is gone too, and I have

no

>idea if it was connected to the liver problem, but I wouldn't be surprised.

>It was not too itchy though. Anyway, thats our story! Liz

>

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[Guest guest]

Biddy the official diagnosis was made after the ERCP in 2/98, and confirmed

by MRCP again this past February. I would like to think the symptoms will

never occur, but I try to be realistic so when they do I am not surprised. I

know what to look for and watch him closely. I also pray alot, and have

faith that God has us both in his hands. Liz

[Guest guest]

Liz,

The last time I saw my Hepatologist, he asked me if I had any rashes. I

didn't know to expect one, but that might imply that your husband's was a

result of PSC.

Dan

> Re: Had Enough!

>

... He had a strange rash about a year and a half ago on his arms,

but that is gone too, and I have no idea if it was connected to the liver

problem, but I wouldn't be surprised. It was not too itchy though. Anyway,

thats our story! Liz