RE: Hello and Question from a new member

[Guest guest]

Most hepatologists will use high dose URSO for PSC. Some other things typically done:

Annual colonoscopies (if you have UC - ulcerative colitis)

Annual bone density scan (depending on the PSC progression)

Quarterly liver function tests (LFT), frequency depending on progression (I now have LFTs every 6 months)

Annual liver ultrasound (again, depending on the PSC progression)

ERCPs are typically only done for therapeutic reasons. In my case, I had one at diagnosis, one to dilate and stent my CBD, and one to remove the stent - nothing since 2001 now. I know some people here have routine ERCPs for stent changeout, but unless the duct collapses after removal, or continues to narrow after stent removal, it shouldn't be necessary (again, in my experience). MRCPs are less invasive and can be used for tracking progress.

I'd make up a list of questions for your next visit - don't rely on your memory. You may be surprised at the answers.

Arne

56 - UC 1977, PSC 2000

Alive and (mostly) well in Minnesota

________________________________

From: [mailto: ] On Behalf Of dmelzer514

Hello All,

....Does this sound like a " normal " treatment strategy for PSC? I would

appreciate any suggestions or advice at this point most of what I know

about PSC I read on internet.

Thanks,

Darcy

[Guest guest]

Darcy Many people are on Urso before and after transplant. Many of the people of this site actually know more than your avaerage Dr about PSC. When our son was first diagnosed we had a half dozen Drs shake their head and say they were sorry about the PSC. They had to admit the only thing they knew was a small article that was in one of their books in college. This disease and its treatment is very individualized. Do not be shy about asking you Dr how much he knows about it. Marti dmelzer514 wrote: Hello All,In Oct 2006 I was jaundiced, itchy and had wacky lab results. I was diagnosed with a stricture in my common bile duct. I had a stent placed, got pancreatitis and had a few unpleasant months. After many tests, referrals and a couple more ERCP's, my doctor told me in March 2007 that I have PSC. After my most recent ERCP and stent change in June, my doctor said again that I have PSC. He has mentioned urso to me and told me that if I want to take it I can. At this point, I'm not. The only treatment plan I have is to show up every 2 or 3 months to get my stent changed. I'm not sure that my doctor has any experience treating someone with PSC. I don't want to overreact and run off to every gastro dr. in my PPO but I'm not sure what to do. Does this sound like a "normal" treatment strategy for PSC? I would appreciate any suggestions or advice at this

point most of what I know about PSC I read on internet.Thanks,Darcy

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.

[Guest guest]

Thanks for the info and the suggestions. This has been really

helpful. Glad to know there's a place I can go and get info from

people who have experience with PSC. It has also been nice to read

posts from the mothers in the group. My mom is having a difficult time

adjusting to this diagnosis.

Also wanted to add that I'm from Ohio. I live in Kent and work in

Canton. Don't think I mentioned that in my original post.

[Guest guest]

It has also been nice to read

> posts from the mothers in the group. My mom is having a difficult time

> adjusting to this diagnosis.

Hi, this is Trevor's mom -

Trev's diagnosis of PSC last August really knocked me sideways, partly

because the Dr's office didn't return calls so I didn't really know

what to expect and went into worst-case-scenario mom freak-out mode.

I'm a bit more sane now, but it's taken almost a year to work through

the shock and grief and a lot of other emotions.

I'd be more than happy to talk to your mom, or any other moms, via

e-mail or phone. It helped me so much to get in touch with other moms

through this site. It takes time to wrap your head around this,

that's for sure, and it's even harder because we're trying to put on a

brave face for our child.

My e-mail address is inkywretch42@.... Have your mom get in

touch!

Katy, mom of Trev, 23, Crohn's 2001, PSC 2006

[Guest guest]

It has also been nice to read

> posts from the mothers in the group. My mom is having a difficult time

> adjusting to this diagnosis.

Hi, this is Trevor's mom -

Trev's diagnosis of PSC last August really knocked me sideways, partly

because the Dr's office didn't return calls so I didn't really know

what to expect and went into worst-case-scenario mom freak-out mode.

I'm a bit more sane now, but it's taken almost a year to work through

the shock and grief and a lot of other emotions.

I'd be more than happy to talk to your mom, or any other moms, via

e-mail or phone. It helped me so much to get in touch with other moms

through this site. It takes time to wrap your head around this,

that's for sure, and it's even harder because we're trying to put on a

brave face for our child.

My e-mail address is inkywretch42@.... Have your mom get in

touch!

Katy, mom of Trev, 23, Crohn's 2001, PSC 2006