New to the Group, Milk Thistle Question

[Guest guest]

Hi everyone,

I was diagnosed with PSC on Monday, and am looking for support from

folks like me. My specific question today has to do with milk

thistle, but I'm also just looking for reassurance and want to hear

from folks who are in my boat.

Re: Milk Thistle... Tons of the research I've read has noted that

silymarin-phosphatidylcholine complex is better than a regular milk

thistle seed extract, because it can be better absorbed. I'm having

trouble finding this supplement, though, and am only running across

milk thistle seed extract with my Internet searches. Can someone

direct me to a site or sites that sell the complex, rather than the

seed extract? My hepatologist has given the go-ahead for me to add

this to my Urso Forte (1000 mg/daily), and I want to start it ASAP.

(Honestly, he didn't sound too wild about it--told me he thinks it's

an expensive placebo in PSC. Said he had no problem with me taking

it, though, if I wanted to.)

So, my background. I was diagnosed with UC in 1983 at the age of 3,

and had a total colectomy with j-pouch creation in 1999, and an

ileostomy takedown three months later. Recovered well, until a bout

with pouchitis after my first obstruction. The pouchitis continued

on and on and on, and I dealt with chronic, recurrent pouchitis and

multiple obstructions for about 5 years. Scope in 2004 *finally*

showed no inflammation in the pouch, but I still couldn't get off the

antibiotics without severe tenesmus and incontinence. GI determined

my problems were due to chronic small bowel bacterial overgrowth, and

I've been on a very low dose of Flagyl along with high doses of

probiotics to keep the bacteria under control since that time, and my

health seemed to be pretty good. At the end of 2005, after a

successful, uncomplicated pregnancy, my husband and I had a daughter--

Danica Anne--born via c-section. She will be 2 on December 30th--

I can't believe how fast time has gone!!

About 10 weeks ago I started itching like mad--thought I was going

insane, because I had no rash and nothing visible on which to blame

the itching. Primary areas of itching were palms of hands, soles of

feet, and ear canals, but at times I itched everywhere on my body.

Tried changing detergents, finding allergic reaction sources, etc.

Nothing worked. Went to my dermatologist who said there are 2 things

that make people itch like crazy: allergic reactions to drugs, and

scabies. Since he was positive I did not have scabies, he treated me

for an allergic reaction. Didn't work. After going back and forth

with the derm for about 6 weeks, and trying all sorts of different

antihistamines for the itching, he finally did bloodwork: Total

Cholesterol 447, Alk Phos 702, AST 125, ALT 196, Bilirubin 1.3.

Whoops, guess there are ~3~ things that can make people itch like

crazy....

He told me to see my GI, and my GI referred me to a hepatologist at

Washington University in St. Louis. Double checked labs, came back

the same except Alk Phos was now over 1000, just a week after the

first labs. Clear liver/gallbladder ultrasound. MRCP findings

conistent with PSC, showed an extremely narrowed area in the Y

junction of the biliary tree. This past Monday an ERCP confirmed

PSC, and I had a stent placed just into the right main hepatic duct,

and had the ducts brushed for cytology.

From first bloodwork to diagnosis, this all took just under 3 weeks,

so it's been a whirlwind of emotions trying to come to grips with all

of this. As if I hadn't already had more than enough health problems

for a couple of lifetimes, I now get *another* fun disease to add to

the mix. :{ Emotionally, I'm not sure where I stand yet. I feel

kind of helpless--I want to be in control, feel like there is more I

can do to stop this disease; but I know there is truly very little

that I, personally, can do. That's driving me the most crazy, ATM,

because I am such a Type-A planner and list maker and know-it-

all. I want to know what is going to happen and be able to plan

accordingly, and I don't know--and my doctor can't even give me those

answers. I hate having my life on hold, but the world seems to have

slowed to a crawl through all of this. I was due to finish my final

class in my second Master's degree this December, and always have

about a thousand projects going at once, not mention raising a

daughter and keeping a household. Somehow the days keep going by,

though, and life keeps piling up around me. I realize it's time to

go to bed again, but all I have accomplished that day is reading more

and more about this new disease, and wondering how this is going to

play out for me.

I'm particularly interested in hearing from women who have had

children after their PSC diagnosis. My husband and I were trying to

conceive again when all of this mess started, and so that of course

is on hold until we get my bloodwork back under control, the stent

removed (8 weeks), the next MRCP (probably 9-10 weeks), and the go-

ahead from my hepatologist. My hepatologist says this has probably

been going on for quite some time, and I might have even had the PSC

for 5 years or more at this point. So, likelihood is that my last

pregnancy was a successful PSC pregnancy, and we just didn't know

it. Knowing now, though, scares me a little, and I want to be as

healthy as possible before having another baby. And, I even wonder--

knowing how this diagnosis can end up, is it even responsible to

think about having another child at this point when my own future is

so uncertain?

Sorry for the novel, I just have no one to talk to about all of this

who can give me 'been there, done that' advice and reassurance.

Thanks for taking the time to read this,

Genevieve

[Guest guest]

I think you'd be better off going to a high-dose URSO regimen. The

standard URSO dosage (for PSCers) is 25-30 mg/kg. I take 2100 mg, for

example (180 lb).

I DO take milk thistle (for 6 years now), but just the " usual "

extract. I did some research and found the Europeans are quite " up " on

milk thistle. I also take SAMe.

I've been asymptomatic since balloon dilatation and stenting, along

with cholecystectomy in 2000 (I'm not saying it's all due to milk

thistle!).

Arne

Hi everyone,

I was diagnosed with PSC on Monday, and am looking for support from

folks like me. My specific question today has to do with milk

thistle, but I'm also just looking for reassurance and want to hear

from folks who are in my boat.

Re: Milk Thistle... Tons of the research I've read has noted that

silymarin-phosphatidylcholine complex is better than a regular milk

thistle seed extract, because it can be better absorbed. I'm having

trouble finding this supplement, though, and am only running across

milk thistle seed extract with my Internet searches. Can someone

direct me to a site or sites that sell the complex, rather than the

seed extract? My hepatologist has given the go-ahead for me to add

this to my Urso Forte (1000 mg/daily), and I want to start it ASAP...

[Guest guest]

Hi Genevieve;

Here's an article on milk thistle that may be of interest:

Milk Thistle

Francine Rainone

Am Fam Physician 2005;72:1285-8

http://www.aafp.org/afp/20051001/1285.html

It mentions a product called 'Ultrathistle' (seed extract bound to

phosphatidylcholine), that seems to be the compound/extract that you

are looking for:

Do a Google search for UltraThistle, and this should give you plenty

of internet sources where you can purchase it.

Best regards,

Dave R.

> I'm having trouble finding this supplement, though, and am only

running across milk thistle seed extract with my Internet searches.

Can someone direct me to a site or sites that sell the complex,

rather than the seed extract?