Re: How long have you lived with PSC? & Medication effectiveness question!

[Guest guest]

When you had the symptoms for all those years without a diagnosis, how

bad were you?

I didn't have my symptoms for very long at all in comparison to you

but I grew so thin because of my liver rejecting fat that the hospital

said I would die, plus my abdominal pain was severe and I was sleeping

all night and day through fatigue. I don't know how you managed to

cope for all that time without help.

> >

> > Just curious, I have it for about 3-4 years that I know of, the really

> > bad symptoms appeared about 18 months before I was sent to hospital

> > but I could have had it for a while before then. I had stomach pains

> > and whatnot for a few years so it may well have been PSC.

> >

> > P.S.

> >

> > I think my medication is losing effectiveness, is this common? I was

> > able to reduce my medication quite a bit last year with no side

> > effects but now I'm starting to feel ill again, even increasing my

> > medication does not seem to ease the discomfort like it used to.

> >

> > Kind regards,

> > Steve.

> >

>

[Guest guest]

I would have horrible URQ pain from time to time. SOme times lasting

for a week at a time and then it would be gone for a few months. After

they took oout my Gallbladder in 1996 they said it would fix the

problem. Wrong! I still had the bouts of pain with occassional

elevated LFT's and every now and then I would through Billirubin in my

urine. They kept checkin gto see if I had redevloped gall stones or if

they had forgotten one but the tests were always negative. Then in

2003 my LFT's went up and stayed up promting a Biopsy and the Diagnosis

of PSC. I don't know if it makes a difference but I have small duct

PSC, which from what I understand tends to progress more slowly then

traditional PSC. I have been fatigued since about 1996 but they said

it was my Thyroid or my arthritis both of which are fairly bad. I take

a very high dose of synthroid and still have limited energy. It hasn't

been until this last year and a half that things have really changed

for me. The pain is still as pain, but my energy levels are horrible

and now I have trouble remembering things. I have also developed

vitamin deficencies and possible s disease. The vitamin

deficencies are due to the PSC advancing according to my Dr. When my B-

12 got really low I could barely function. ANy way, the PSC is just

starting to invade my large bile ducts but many of my small ducts are

completely closed off. I am not really sure where this leaves me and

since I just started seeing a new Hepatologist who wants my endocrine

problems evaluated before He makes any new treatment recommendations it

will be a while before I know much.

Is your PSC small or large Duct, If you know? I am curious about the

diferences.

Dawn

>

> When you had the symptoms for all those years without a diagnosis, how

> bad were you?

> I didn't have my symptoms for very long at all in comparison to you

> but I grew so thin because of my liver rejecting fat that the hospital

> said I would die, plus my abdominal pain was severe and I was sleeping

> all night and day through fatigue. I don't know how you managed to

> cope for all that time without help.

>

>

[Guest guest]

I have no idea what type mine is, the hospital told me that very

little is know about the disease but they did say that my case was

very aggressive. They told me that the small ducts of my liver were

closed up but I've only had one liver scan and a biopsy, both taken

when I was first diagnosed about 18 months ago.

> >

> > When you had the symptoms for all those years without a diagnosis, how

> > bad were you?

> > I didn't have my symptoms for very long at all in comparison to you

> > but I grew so thin because of my liver rejecting fat that the hospital

> > said I would die, plus my abdominal pain was severe and I was sleeping

> > all night and day through fatigue. I don't know how you managed to

> > cope for all that time without help.

> >

> >

>

[Guest guest]

I have no idea what type mine is, the hospital told me that very

little is know about the disease but they did say that my case was

very aggressive. They told me that the small ducts of my liver were

closed up but I've only had one liver scan and a biopsy, both taken

when I was first diagnosed about 18 months ago.

> >

> > When you had the symptoms for all those years without a diagnosis, how

> > bad were you?

> > I didn't have my symptoms for very long at all in comparison to you

> > but I grew so thin because of my liver rejecting fat that the hospital

> > said I would die, plus my abdominal pain was severe and I was sleeping

> > all night and day through fatigue. I don't know how you managed to

> > cope for all that time without help.

> >

> >

>

[Guest guest]

I have no idea what type mine is, the hospital told me that very

little is know about the disease but they did say that my case was

very aggressive. They told me that the small ducts of my liver were

closed up but I've only had one liver scan and a biopsy, both taken

when I was first diagnosed about 18 months ago.

> >

> > When you had the symptoms for all those years without a diagnosis, how

> > bad were you?

> > I didn't have my symptoms for very long at all in comparison to you

> > but I grew so thin because of my liver rejecting fat that the hospital

> > said I would die, plus my abdominal pain was severe and I was sleeping

> > all night and day through fatigue. I don't know how you managed to

> > cope for all that time without help.

> >

> >

>

[Guest guest]

Steve,

I don't really know. I know that the first

time LFTs showed that something was wrong was in August 2001. I don't remember

doing LFT tests before that. I do remember having complaints about pain in my

right side more than 15 years ago, but nothing was found in the ultrasound that

was done then and I was told it was probably IBS (I now think it could be the

first sign of PSC, but I can't know for sure).

Regards,

Chaim

From: [mailto: ] On Behalf Of bty12645349

Sent: Monday, September 22, 2008

20:00

To:

Subject: How long

have you lived with PSC? & Medication effectiveness question!

Just curious, I have it for about 3-4 years that I

know of, the really

bad symptoms appeared about 18 months before I was sent to hospital

but I could have had it for a while before then. I had stomach pains

and whatnot for a few years so it may well have been PSC.

P.S.

I think my medication is losing effectiveness, is this common? I was

able to reduce my medication quite a bit last year with no side

effects but now I'm starting to feel ill again, even increasing my

medication does not seem to ease the discomfort like it used to.

Kind regards,

Steve.