new to list

[Guest guest]

Barb,

In my case I have been in and out for years, but I take a lot of meds. to

hopefully ward off infection and such plus quite a few supplements as

directed by my Doctor. The only real thing is the fatigue coming on and off

with no warning, but it passes.

TimZ

[Guest guest]

Hi Barbara,

When my husband was first diagnosed with PSC he had four cholangitis infections within 3 months. After being on Actigall, Milk Thistle and tagament he didn't have another for almost a year and just had one after 9 months. In between he does pretty well except for a lot of fatigue. He is taking the higher dosage of 1800 mg a day. They measure the higher doses by weight of a person. The symptoms seem to go in cycles. Some people have stents, some take antibiotics all the time. Fortunately the last several times Phil went into the hospital for 3 days of IV Cipro and then resumes his life. When he was first diagnosed and because he had been laid off from his job just prior and was 56 years old he opted to go on disability. This May he is approaching the 2 year waiting period to get Medicare and has already received the paperwork for it. I work and we have started a home based business which puts him in control of his time according to his energy level. It's worked out pretty well. There are also two different aspects of the disease, some are prone to infections, like my Phil and others just gradually develop more symptoms and their liver cirrhoses but I think in both cases there are level times of feeling a lot better and then whammo the bad stuff sets in. So you ride it out and hope for a level break time. How old is your mother? We have a several Barbara's in the group, one goes by Barb and one by Barby. We have two Peggys so I go by Peg. You might want to sign with a last initial or where you live.

Peg, wife of Phil (57), UC 30 years, dx PSC 12/98, listed-status 3-UCLA-2/2000, living Los Angeles suburbs, CA

[Guest guest]

Welcome Barbara! You seem to have a good handle at

understanding all the medical information being thrown

your Mom's way. When I was going through the dx

process, I was hearing things I had never heard or

knew existed before. Sounds like your Mom may have a

very good advocate.

Out on the web, you can find tons of info and most of

it sounds gloomy and barren of hope. At least that is

how I felt until I found this site.

The one thing I pull from this group is an

overwhelming sense that Actigall does help with the

disease in some manner. I don't think there is any

drug, diet or program that will stop the disease. It

is progressive, but at this site, you will find

varying treatment options talked about and their

successes and failures.........what this site does, is

give you enough information to ask informed questions

of the doctor and lets you know first-hand that your

mom can live more years than the doctor thinks.

I am recently coming out of a cholangitis attack and

this is just my second one since being dx. I get the

fatigue, followed by intense itching and pale stools,

and sometimes I feel chilled although I rarely have

run a fever. Anyhow, I am on Actigall, and during a

attack, I take 500 mg x2 a day of Cipro to knock out

the infection which inevitable causes the bile backup

in the liver, causing the itching and pale stools and

dark urine.

I also take Questran (Cholestraymine) for itching...it

is a somewhat icky powder that you mix in a drink and

after drinking it feel like you just swalled wet sand.

By and large, the Questran, Actigall, Cipro help with

the symptoms of psc. I also go to a tanning booth for

light treatments to help break down the bile that gets

deposited in the skin layers when it is backed up in

the blood. This approach is somewhat questionable,

but I did get a nod from both my GI and Liver doc, and

it seems to work for me.

You will find that everybody here has varying degrees

of symptoms and stages and different approaches to

self-help.

On behalf of the group, I wish you and your Mom the

best! One other thing, there is new technology of

having live liver donors. , a regular poster

received a liver from a friend, Handi, and my daughter

has graciously offered me her liver when the time

comes. It took a while to really plant that seed in

her, but once she realized I was serious and she

started reading the information I provided her, she

realized that it was something she wanted to do for

me. I am hoping I don't need her liver for a very

very long time.

I don't want to blast you with too much information.

If you have read posts over the past few days we have

dealt with the issues of how and how much doctors

should or shouldn't place on our shoulders when first

being diagnosed. Everybody will absorb the

information in their own time when they are ready to

deal with it.

You made a smart choice coming to us for support. We

won't let you down...we might tease, embarasse, or

chide you from time to time.......but we will be here

for you and for your Mom.

Chatty (err, from Michigan)

[Guest guest]

Barb,

welcome to the group...and as we always say...sorry you have to be

here....there will be folks who will disagree with me on this one, but

that's what makes us such a motley crew here.....this disease is thought to

be auto-immune...it is my belief and the belief of a few of Mike's Dr.'s

including his hepatologist that this disease like others of the same

nature...can go into remission...we believe Mike to be in remission right

now with no progression of his disease in over 2 years...of course he is

taking oodles of supplements...

I would be happy to share any ideas we have utilized.....

Patti

>

>Reply-To:

>To: PSCSupport < >

>Subject: new to list

>Date: Thu, 01 Feb 2001 16:45:57 -0800

>

><< Barbara..vcf >>

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Hi, I am new to the discussion list. My mom was dx with PSC in December

2000. She had a tumultuous year from April until the dx in December.

She has had intermittent jaundice, itching, pale stools, dark urine, etc.,

since the middle of April. She was dx with pancreatic cancer which

was disproved in exploratory surgery but had to undergo a whipple procedure

in July which was followed by a light heart attack. At the time of

this last dx the dr looked very upset and told me that her prognosis was

not good, that her symptoms would continue to worsen. He started

her on Actigall and she started improving immediately. A couple of

weeks ago she had retained so much fluid she couldn't get any shoes on

except oversized house shoes which I had to go buy. After being put

on lasix the fluid left (20 pounds in about 4 days). With the exception

of occasional itching and leg tremors she is doing great.....my question:

does the disease go into remission; do you have symptoms all the time if

it is not in remission, etc.

[Guest guest]

Hi, I am new to the discussion list. My mom was dx with PSC in December

2000. She had a tumultuous year from April until the dx in December.

She has had intermittent jaundice, itching, pale stools, dark urine, etc.,

since the middle of April. She was dx with pancreatic cancer which

was disproved in exploratory surgery but had to undergo a whipple procedure

in July which was followed by a light heart attack. At the time of

this last dx the dr looked very upset and told me that her prognosis was

not good, that her symptoms would continue to worsen. He started

her on Actigall and she started improving immediately. A couple of

weeks ago she had retained so much fluid she couldn't get any shoes on

except oversized house shoes which I had to go buy. After being put

on lasix the fluid left (20 pounds in about 4 days). With the exception

of occasional itching and leg tremors she is doing great.....my question:

does the disease go into remission; do you have symptoms all the time if

it is not in remission, etc.

Attachment: vcard [not shown]

[Guest guest]

Barbara,

Welcome to the group. Sorry to hear that your mother has PSC. I

might choose PSC over pancreatic cancer, but would rather avoid

both.

Your mother has had some of the classic symptoms of blocked bile

ducts, jaundice, pale stools, etc., and of liver failure,

retaining fluid. The bile blocked by the scarred ducts creates a

inhospitable environment for the liver cells which then die,

resulting in liver failure. The blockages caused by infections

and strictures can be opened up by treatment with antibiotics,

or stents which force the strictures open. Actigall allows the

bile to flow more freely out of the liver. This draining of the

bile lets the liver have a chance to recover. Under normal

conditions it will quickly grow to the size needed by your body.

I believe that even though the Actigall, stenting, antibiotics

keep the bile flowing, stopping the liver damage, the

destruction of the bile ducts continues unabated. So while the

symptoms subside with the proper treatment, I don't think it is

remission of PSC that we see, but an improved liver function.

TimR ltx 4/4/98

--- Barbara wrote:

She has had intermittent jaundice, itching, pale stools, dark

urine, etc., ...[dr] told me that her prognosis was

not good, that her symptoms would continue to worsen. A couple

of

weeks ago she had retained so much fluid she couldn't get any

shoes on. ... With the exception of occasional itching and leg

tremors she is doing great.....my question:

does the disease go into remission; do you have symptoms all the

time if it is not in remission, etc.

__________________________________________________

Get personalized email addresses from Yahoo! Mail - only $35

a year! http://personal.mail.yahoo.com/

[Guest guest]

Barb as Tim indicated, if your Mom takes the Questran

first thing in the morning before breakfast, and then

waits 3 hours to take her Acitgall it will work. It

took a little free play to figure out what the best

timing was for me. I know I need to drink the

Questran before I eat, that way it is there and ready

to receive that bile.

I know it can be difficult taking care of parents. I

just lost my dad 3 months ago and we had an almost

full year battle with his heart and lung problems and

you just want to scream at all the stuff they have to

endure while you are nearly helplessly watching things

deteriorate. It is very hard to watch the people you

felt were your rock growing up become weak and unable

to help themselves. Cherish all the moments you have

with your Mom. Sounds like you are a sweetheart of a

daughter!

[Guest guest]

Thanks for all the info. I certainly hope you don't need a transplant for

years but it is wonderful that your daughter is willing to be a doner.

Unfortunately, Mother is not a candidate for a transplant due to her age

(79) and heart condition. Mother was on Questran before she started taking

the Actigall...I check all her meds on the web and when I checked on

Actigall Questran was top of the list to NOT TAKE with Actigall....said it

would interfer with the effectiveness of Actigall.....I called her GI dr.,

and he took her off Questran immediately....apparently it isn't affecting

you, so maybe we need to rethink putting her back on it. Again, thanks for

the info, and I'll probably be coming back for more. The cardiologist

lowered the lasix on Tuesday; last night Mother's feet and legs had stated

swelling really bad.

Baudoux-Northrup wrote:

> Welcome Barbara! You seem to have a good handle at

> understanding all the medical information being thrown

> your Mom's way. When I was going through the dx

> process, I was hearing things I had never heard or

> knew existed before. Sounds like your Mom may have a

> very good advocate.

>

> Out on the web, you can find tons of info and most of

> it sounds gloomy and barren of hope. At least that is

> how I felt until I found this site.

>

> The one thing I pull from this group is an

> overwhelming sense that Actigall does help with the

> disease in some manner. I don't think there is any

> drug, diet or program that will stop the disease. It

> is progressive, but at this site, you will find

> varying treatment options talked about and their

> successes and failures.........what this site does, is

> give you enough information to ask informed questions

> of the doctor and lets you know first-hand that your

> mom can live more years than the doctor thinks.

>

> I am recently coming out of a cholangitis attack and

> this is just my second one since being dx. I get the

> fatigue, followed by intense itching and pale stools,

> and sometimes I feel chilled although I rarely have

> run a fever. Anyhow, I am on Actigall, and during a

> attack, I take 500 mg x2 a day of Cipro to knock out

> the infection which inevitable causes the bile backup

> in the liver, causing the itching and pale stools and

> dark urine.

>

> I also take Questran (Cholestraymine) for itching...it

> is a somewhat icky powder that you mix in a drink and

> after drinking it feel like you just swalled wet sand.

> By and large, the Questran, Actigall, Cipro help with

> the symptoms of psc. I also go to a tanning booth for

> light treatments to help break down the bile that gets

> deposited in the skin layers when it is backed up in

> the blood. This approach is somewhat questionable,

> but I did get a nod from both my GI and Liver doc, and

> it seems to work for me.

>

> You will find that everybody here has varying degrees

> of symptoms and stages and different approaches to

> self-help.

>

> On behalf of the group, I wish you and your Mom the

> best! One other thing, there is new technology of

> having live liver donors. , a regular poster

> received a liver from a friend, Handi, and my daughter

> has graciously offered me her liver when the time

> comes. It took a while to really plant that seed in

> her, but once she realized I was serious and she

> started reading the information I provided her, she

> realized that it was something she wanted to do for

> me. I am hoping I don't need her liver for a very

> very long time.

>

> I don't want to blast you with too much information.

> If you have read posts over the past few days we have

> dealt with the issues of how and how much doctors

> should or shouldn't place on our shoulders when first

> being diagnosed. Everybody will absorb the

> information in their own time when they are ready to

> deal with it.

>

> You made a smart choice coming to us for support. We

> won't let you down...we might tease, embarasse, or

> chide you from time to time.......but we will be here

> for you and for your Mom.

>

> Chatty (err, from Michigan)

>

Attachment: vcard [not shown]

[Guest guest]

thank you. Mother is 79 and we both live in Huntsville, AL.

Mother and my step-father (86 yo) did live about 75 miles away, but as

her health deteriorated we finally convinced them to move to an apartment

near me (I am an only child). They still have their independence

but I am close enough to take care of any problems that arise. Right

now Mother is doing well enough for them to go back home every 2 or 3 weeks.

P Alfeld wrote:

Hi

Barbara,When

my husband was first diagnosed with PSC he had four cholangitis infections

within 3 months. After being on Actigall, Milk Thistle and tagament

he didn't have another for almost a year and just had one after 9 months.

In between he does pretty well except for a lot of fatigue. He is

taking the higher dosage of 1800 mg a day. They measure the higher

doses by weight of a person. The symptoms seem to go in cycles.

Some people have stents, some take antibiotics all the time. Fortunately

the last several times Phil went into the hospital for 3 days of IV Cipro

and then resumes his life. When he was first diagnosed and because

he had been laid off from his job just prior and was 56 years old he opted

to go on disability. This May he is approaching the 2 year waiting

period to get Medicare and has already received the paperwork for it.

I work and we have started a home based business which puts him in control

of his time according to his energy level. It's worked out pretty

well. There are also two different aspects of the disease, some are

prone to infections, like my Phil and others just gradually develop more

symptoms and their liver cirrhoses but I think in both cases there are

level times of feeling a lot better and then whammo the bad stuff sets

in. So you ride it out and hope for a level break time. How old is

your mother? We have a several Barbara's in the group, one goes by

Barb and one by Barby. We have two Peggys so I go by Peg. You

might want to sign with a last initial or where you live.

Peg, wife of Phil (57), UC 30 years, dx PSC 12/98,

listed-status 3-UCLA-2/2000, living Los Angeles suburbs, CA

Attachment: vcard [not shown]

[Guest guest]

thank you so much for the info and kinds words....I sometimes have a hard

time with this role reversal I find myself in.

Baudoux-Northrup wrote:

> Barb as Tim indicated, if your Mom takes the Questran

> first thing in the morning before breakfast, and then

> waits 3 hours to take her Acitgall it will work. It

> took a little free play to figure out what the best

> timing was for me. I know I need to drink the

> Questran before I eat, that way it is there and ready

> to receive that bile.

>

> I know it can be difficult taking care of parents. I

> just lost my dad 3 months ago and we had an almost

> full year battle with his heart and lung problems and

> you just want to scream at all the stuff they have to

> endure while you are nearly helplessly watching things

> deteriorate. It is very hard to watch the people you

> felt were your rock growing up become weak and unable

> to help themselves. Cherish all the moments you have

> with your Mom. Sounds like you are a sweetheart of a

> daughter!

>

>

Attachment: vcard [not shown]

[Guest guest]

Traci,

We are here for each other, both the PSCer and some care takers. So ask away

or just bitch about what ever.

TimZ