Introduction and comments

[Guest guest]

Hello to everybody and greetings from Finland!

First I would like to say that this is a truly great support group! I have been

following the

discussion for a while and I am very impressed of the knowledge, caring and

support one

can find on these pages. Specially the feeling of " not giving up " and taking

care of others

in a very positive, optimistic and -when needed- comforting manner has made a

great

impression on me. I would almost say that looking from this side of Atlantic one

can here

see some truly great and most admirable sides of the American Spirit, if a may

say so!

I myself am a 45 yeas old male working in the arts (music) and education field

with UC and

PSC. I was dx:d 1983 with UC and small duct PSC. Small duct PSC did not progress

until

beginning of 90's and has since developed to classical large duct PSC. I have

luckily

managed to bee almost without symptoms until this year, but know I have got som

trouble with sometimes quite strong upper abdominal pain (mostly after meals),

rising

LFT's and some other small things. And of course I am getting more worried about

the

developement and

above all about the risk of CCA after such quite long desease.

This takes me to the current discusion of " indolent desease " , put I will put

those remarks

in a separat message under that topic.

Once more by best greetings to everybody on these pages!

UC/small duct PSC '83, large duct PSC '97

( will here stand for Petteri, which is a finnish version of that name)

[Guest guest]

Hi!

I have been on sulfasalazine for the UC almost the whole time except couple of

years in

the end of 80's, when I was on 5-ASA (mesalazine, Asacol) and some time in 90's

(half a

year - one year). Sulfasalazine was better, because without it I developed

minor pain in

joints, which easily happens with UC.

Then I was on metronidazole for quite a long time, could be even over 10 years

from

round -90 to round 2000, was taking part in a finnish study (link below). I then

finished

with that, because there seemed to be some neurological problems

(polyneuropathy) after

long time use.

Urso has been on the menu since beginning of 90's, first smaller dose, now

bigger dose

the last few years (18 g/kg, would maybe fancy to make the dose even bigger, but

there is

allready plenty to take, when body weight is over 100 kg.)

So the proper PSC medication really started round -90. Most of the time I have

kept quite

a healthy diet, but definitely not allways. The interesting question is now of

course, that if

the healthy diet periods have been beneficial for the health and would it have

been wiser

to stick to that strategy even harder.

Or then I just have been lucky with a slower progress.

Best greetings

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=15565569

> Wow, , that's a long time to be symptom-free - congratulations.

> Have you been taking any medications for the PSC since 1983? Urso?

> Fish oil?

[Guest guest]

Hi!

I have been on sulfasalazine for the UC almost the whole time except couple of

years in

the end of 80's, when I was on 5-ASA (mesalazine, Asacol) and some time in 90's

(half a

year - one year). Sulfasalazine was better, because without it I developed

minor pain in

joints, which easily happens with UC.

Then I was on metronidazole for quite a long time, could be even over 10 years

from

round -90 to round 2000, was taking part in a finnish study (link below). I then

finished

with that, because there seemed to be some neurological problems

(polyneuropathy) after

long time use.

Urso has been on the menu since beginning of 90's, first smaller dose, now

bigger dose

the last few years (18 g/kg, would maybe fancy to make the dose even bigger, but

there is

allready plenty to take, when body weight is over 100 kg.)

So the proper PSC medication really started round -90. Most of the time I have

kept quite

a healthy diet, but definitely not allways. The interesting question is now of

course, that if

the healthy diet periods have been beneficial for the health and would it have

been wiser

to stick to that strategy even harder.

Or then I just have been lucky with a slower progress.

Best greetings

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=15565569

> Wow, , that's a long time to be symptom-free - congratulations.

> Have you been taking any medications for the PSC since 1983? Urso?

> Fish oil?

[Guest guest]

Hi!

I have been on sulfasalazine for the UC almost the whole time except couple of

years in

the end of 80's, when I was on 5-ASA (mesalazine, Asacol) and some time in 90's

(half a

year - one year). Sulfasalazine was better, because without it I developed

minor pain in

joints, which easily happens with UC.

Then I was on metronidazole for quite a long time, could be even over 10 years

from

round -90 to round 2000, was taking part in a finnish study (link below). I then

finished

with that, because there seemed to be some neurological problems

(polyneuropathy) after

long time use.

Urso has been on the menu since beginning of 90's, first smaller dose, now

bigger dose

the last few years (18 g/kg, would maybe fancy to make the dose even bigger, but

there is

allready plenty to take, when body weight is over 100 kg.)

So the proper PSC medication really started round -90. Most of the time I have

kept quite

a healthy diet, but definitely not allways. The interesting question is now of

course, that if

the healthy diet periods have been beneficial for the health and would it have

been wiser

to stick to that strategy even harder.

Or then I just have been lucky with a slower progress.

Best greetings

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=15565569

> Wow, , that's a long time to be symptom-free - congratulations.

> Have you been taking any medications for the PSC since 1983? Urso?

> Fish oil?

[Guest guest]

May I ask how you were diagnosed?

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of petteri_s

Sent: Wednesday, May 02, 2007

22:10

To:

Subject: Re:

Introduction and comments

Hi!

I have been on sulfasalazine for the UC almost the whole time except couple of

years in

the end of 80's, when I was on 5-ASA (mesalazine, Asacol) and some time in 90's

(half a

year - one year). Sulfasalazine was better, because without it I developed

minor pain in

joints, which easily happens with UC.

Then I was on metronidazole for quite a long time, could be even over 10 years

from

round -90 to round 2000, was taking part in a finnish study (link below). I

then finished

with that, because there seemed to be some neurological problems

(polyneuropathy) after

long time use.

Urso has been on the menu since beginning of 90's, first smaller dose, now

bigger dose

the last few years (18 g/kg, would maybe fancy to make the dose even bigger,

but there is

allready plenty to take, when body weight is over 100 kg.)

So the proper PSC medication really started round -90. Most of the time I have

kept quite

a healthy diet, but definitely not allways. The interesting question is now of

course, that if

the healthy diet periods have been beneficial for the health and would it have

been wiser

to stick to that strategy even harder.

Or then I just have been lucky with a slower progress.

Best greetings

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=15565569

> Wow, , that's a long time to be symptom-free - congratulations.

> Have you been taking any medications for the PSC since 1983? Urso?

> Fish oil?

[Guest guest]

May I ask how you were diagnosed?

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of petteri_s

Sent: Wednesday, May 02, 2007

22:10

To:

Subject: Re:

Introduction and comments

Hi!

I have been on sulfasalazine for the UC almost the whole time except couple of

years in

the end of 80's, when I was on 5-ASA (mesalazine, Asacol) and some time in 90's

(half a

year - one year). Sulfasalazine was better, because without it I developed

minor pain in

joints, which easily happens with UC.

Then I was on metronidazole for quite a long time, could be even over 10 years

from

round -90 to round 2000, was taking part in a finnish study (link below). I

then finished

with that, because there seemed to be some neurological problems

(polyneuropathy) after

long time use.

Urso has been on the menu since beginning of 90's, first smaller dose, now

bigger dose

the last few years (18 g/kg, would maybe fancy to make the dose even bigger,

but there is

allready plenty to take, when body weight is over 100 kg.)

So the proper PSC medication really started round -90. Most of the time I have

kept quite

a healthy diet, but definitely not allways. The interesting question is now of

course, that if

the healthy diet periods have been beneficial for the health and would it have

been wiser

to stick to that strategy even harder.

Or then I just have been lucky with a slower progress.

Best greetings

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=15565569

> Wow, , that's a long time to be symptom-free - congratulations.

> Have you been taking any medications for the PSC since 1983? Urso?

> Fish oil?