no relief from ERCP - help!

[Guest guest]

Somewhat new here, getting desperate. My diagnosis is PSC (first

indication in 1999), with UC type symptoms as well- I've dropped 12

lbs in the last 8 weeks. I had an ERCP going on 2 weeks ago for a

dilation, but there was a perforation of my bile duct, so a temporary

stent was inserted that I will have removed in 2 more weeks. I

experienced initial (about 2 days) relief from itching post ERCP, but

now am back to the severity that it was before the ERCP, which was

practically unbearable. I've been on Atarax, doxipin, rifampin and

tried questran all to no avail. Take Actigal 900mg. I'm scheduled for

a consultation with a UCLA Med Center Hepatologist November, as my

current GI is not communicative enough for me at this point. I was

really hoping the ERCP would stave off my pruritis- is it really bad

that it didn't help or have others not had relief? Thank you for any

feedback.

Lara

38 y.o.

Mom of 2 great girls

[Guest guest]

Lara

Been there, felt that,

Know just how you feel, although that doesn't help a bit. I noticed you only take 900 ml of actigall, that is a bit low compared to many of us. I take 1200/day and many others take a higher dose. Also, others take ursodiol, a bit different but pretty much the same med. It might make a difference to try to take more and/or switch to the other, after checking in with the docs.

I finally found relief from the itch after UV/B light treatment. It took 2-3 visits a week for 5-6 weeks. It does raise concerns with skin problems, but I went to the hospital light therapy program and was closely monitored. First treatment was 12 seconds, last was 5 min. so the exposure was short and worked for me. Others have tried it with no success, but maybe they didn't try it long enough.

In the meantime, try using a stiff bath brush to reach all the places that need scratching. It really gets the itch without damaging your skin. I also found pain meds helped slightly, not much but any relief was welcome.

Hope this helps a little,

Take care

MizKit PSC '81-UC-'96, Ltx '02, ileostomy '04

[Guest guest]

Lara

Been there, felt that,

Know just how you feel, although that doesn't help a bit. I noticed you only take 900 ml of actigall, that is a bit low compared to many of us. I take 1200/day and many others take a higher dose. Also, others take ursodiol, a bit different but pretty much the same med. It might make a difference to try to take more and/or switch to the other, after checking in with the docs.

I finally found relief from the itch after UV/B light treatment. It took 2-3 visits a week for 5-6 weeks. It does raise concerns with skin problems, but I went to the hospital light therapy program and was closely monitored. First treatment was 12 seconds, last was 5 min. so the exposure was short and worked for me. Others have tried it with no success, but maybe they didn't try it long enough.

In the meantime, try using a stiff bath brush to reach all the places that need scratching. It really gets the itch without damaging your skin. I also found pain meds helped slightly, not much but any relief was welcome.

Hope this helps a little,

Take care

MizKit PSC '81-UC-'96, Ltx '02, ileostomy '04

[Guest guest]

Thanks for writing . This was actually my second ERCP, the

first one was about 14 months ago that was to confirm diagnosis.

It was done at Stanford's Hospital and was an easy thing compared to

the most recent one. I was also asymptomatic before that, so the

last 12 months have been rough. My gallbladder was the first thing

to go (2004), so we do have some commonalities! thanks again for

sharing, I think I read a post or two where people felt better right

away, I was hopeful. take good care.

Lara

> >

> > Somewhat new here, getting desperate. My diagnosis is PSC (first

> > indication in 1999), with UC type symptoms as well- I've dropped

12

> > lbs in the last 8 weeks. I had an ERCP going on 2 weeks ago for

a

> > dilation, but there was a perforation of my bile duct, so a

> temporary

> > stent was inserted that I will have removed in 2 more weeks. I

> > experienced initial (about 2 days) relief from itching post

ERCP,

> but

> > now am back to the severity that it was before the ERCP, which

was

> > practically unbearable. I've been on Atarax, doxipin, rifampin

and

> > tried questran all to no avail. Take Actigal 900mg. I'm

scheduled

> for

> > a consultation with a UCLA Med Center Hepatologist November, as

my

> > current GI is not communicative enough for me at this point. I

was

> > really hoping the ERCP would stave off my pruritis- is it really

> bad

> > that it didn't help or have others not had relief? Thank you

for

> any

> > feedback.

> >

> > Lara

> > 38 y.o.

> > Mom of 2 great girls

> >

>

[Guest guest]

Thanks for writing . This was actually my second ERCP, the

first one was about 14 months ago that was to confirm diagnosis.

It was done at Stanford's Hospital and was an easy thing compared to

the most recent one. I was also asymptomatic before that, so the

last 12 months have been rough. My gallbladder was the first thing

to go (2004), so we do have some commonalities! thanks again for

sharing, I think I read a post or two where people felt better right

away, I was hopeful. take good care.

Lara

> >

> > Somewhat new here, getting desperate. My diagnosis is PSC (first

> > indication in 1999), with UC type symptoms as well- I've dropped

12

> > lbs in the last 8 weeks. I had an ERCP going on 2 weeks ago for

a

> > dilation, but there was a perforation of my bile duct, so a

> temporary

> > stent was inserted that I will have removed in 2 more weeks. I

> > experienced initial (about 2 days) relief from itching post

ERCP,

> but

> > now am back to the severity that it was before the ERCP, which

was

> > practically unbearable. I've been on Atarax, doxipin, rifampin

and

> > tried questran all to no avail. Take Actigal 900mg. I'm

scheduled

> for

> > a consultation with a UCLA Med Center Hepatologist November, as

my

> > current GI is not communicative enough for me at this point. I

was

> > really hoping the ERCP would stave off my pruritis- is it really

> bad

> > that it didn't help or have others not had relief? Thank you

for

> any

> > feedback.

> >

> > Lara

> > 38 y.o.

> > Mom of 2 great girls

> >

>

[Guest guest]

Lara,

I am Marsha and I go to U C LA.

If you want to you can give me a call .

I can give you some insight what I have gone through.

I have had PSC for 8 years now.

Marsha

[Guest guest]

Lara,

I am Marsha and I go to U C LA.

If you want to you can give me a call .

I can give you some insight what I have gone through.

I have had PSC for 8 years now.

Marsha

[Guest guest]

Lara,

I am Marsha and I go to U C LA.

If you want to you can give me a call .

I can give you some insight what I have gone through.

I have had PSC for 8 years now.

Marsha