Re: Question about Actigall? All opinions welcome..

[Guest guest]

Jen,

Both Actigall and URSO seem to work well for most people. Actigall

has helped me keep the cholangitis under control.

Why dont you call Dr. Brodsky at s Hopkins and inquire about

Cyclophosphamide?. It has cured a lot of people with autoimmune

diseases. He is taking those with PSC and PBC but I think you have

to pay for the meds. If I had early PSC I would sell everything own

to participate over there. If it meant a cure. If your early on in

the disease perhaps this would prevent you from ever needing a

transplant. Did you read the article on his work?. He is amazing.

Andi

[Guest guest]

Andi,

I wrote Dr. Brodsy an e-mail and he wrote back saying that he is not

currently using Cyclophosphamide for PSC.

~

>

> Reply-To:

> Date: Sun, 24 Feb 2002 02:32:10 -0000

> To:

> Subject: Re: Question about Actigall? All opinions welcome..

>

>

>

> Jen,

>

> Both Actigall and URSO seem to work well for most people. Actigall

> has helped me keep the cholangitis under control.

>

> Why dont you call Dr. Brodsky at s Hopkins and inquire about

> Cyclophosphamide?. It has cured a lot of people with autoimmune

> diseases. He is taking those with PSC and PBC but I think you have

> to pay for the meds. If I had early PSC I would sell everything own

> to participate over there. If it meant a cure. If your early on in

> the disease perhaps this would prevent you from ever needing a

> transplant. Did you read the article on his work?. He is amazing.

>

> Andi

>

>

>

[Guest guest]

> Andi,

>

> I wrote Dr. Brodsy an e-mail and he wrote back saying that he is

not

> currently using Cyclophosphamide for PSC.

>

> ~

>

Thats a shame...he was last year(he just required you to pay for the

it). I think that death at Hopkins had something to do with this

decision. He has used it for Pimphigus, Lupus and several other

autoimmune diseases(which led to total remission). Oh well...

Andi

[Guest guest]

Jen, I have bloodwork every 3 months, currently. They may go to 6 months if

I continue to do well.

Actigal/Urso is tolerated well by most (not all) patients, and appears to

help. Either one has equivalent results, but some people tolerate one

better than the other (I can't perceive any difference). It MAY adversely

affect UC.

If you are early stage PSC, it certainly will help. Anything the improves

bile flow is a help. I'd suggest it again. There are numerous studies in

progress; preliminary results are encouraging. I was put on high dose

Ursodiol last summer.

Arne

50 - UC 1977 - PSC 2000

Alive and (mostly) well in Minnesota

-----Original Message-----

From: katielou828

Do you think I should insist on either Actigall or Urso? If so why? and

which one? Also, how often should I have my bloodwork done?

Jen

[Guest guest]

Jen,

I think you only need blood work done yearly, or even every

other year until you have symptoms. Only reason at this time to

be tested more frequently is to try and find something else.

Get on Urso - either generic, Ursoidol or Actigall (the 2 Brand

forms). You may have less tolerance for one over another, but

all have the same proven and potential benefits that make

starting it early worthwhile.

Tim R

__________________________________________________

[Guest guest]

Jen, I'm new to the group, but not to psc. I've had it for over 25 years, but other than the itching, some jaundice and fatigue, Ive led a normal life until 4 or 5 years ago. The itching was terrible but my doc put me on rifampin and the itching is slight now. I am now on the transplant list and have taken actigall for a couple of years which has helped thin my bile. If you are newly diag with psc, it could be a long time before it progresses. We are all different but I hope yours moves as slowly as mine did. Sorry, long winded.

Tim

[Guest guest]

Tim,

I was shocked to hear you've had PSC for 25 years. Not that you'll be excited about this, but you're the only one I know that has had it longer than me, and still has not had a tx. I guess our time is coming soon enough, huh?

I am have fought chronic pancreatitis for years, but the bouts with liver inflamation and such has been sporadic. I am finally experiencing those things that I had only read about on the internet: Belly and other parts swelling, rashes, exhaustion, etc.

I wish you the best of luck and pray that you get a new, old liver soon. (This is the joke around my house - the body junk yard where you can get new parts for our car from old cars.) It doesn't take much to amuse us around here - - good thing!

[Guest guest]

I was shocked to hear you've had PSC for 25 years. Not that you'll be excited about this, but you're the only one I know that has had it longer than me, and still has not had a tx. I guess our time is coming soon enough, huh?

Sorry to sound boastful but I've had psc since 1973 (well that was when I first had the typical symptoms anyway! :~)

Barbara (UK)