Re: A couple of quick questions

[Guest guest]

Hi ,

I will try and answer your questions:

1. Anyone had an MRCP? I am assuming an ERCP is " better " , can give more details?

I haven't had a MRCP or an ERCP.

2. What is considered a high dose of Actigall?

There is info on the PSC_support website about common meds. I believe most of us are on it (or URSO) It is dosed based on body weight most take between 1000mg and 2000mg /day, but I am on a low dose (500mg/day with weight of 210lb). Some have stopped taking it altogether because they have side effects.

3. Is there anyone who has been diagnosed for a long time (I was diagnosed in 1995 with psc and crohns), who have been told they have been misdiagnosed or that their liver has actually gotten a lot better over a long period of time?

I was diagnosed a long time ago (19 years) and my LFT numbers have been better in the last nine years, since starting URSO, than they were the first ten years without URSO. I don't believe I was misdiagnosed or have been cured, just blessed!

4. Can the Actigall reverse damage?

I don't believe it does, just delays progression of the disease. But I do believe in God and miracles.

Ian (52) PSC 89

[Guest guest]

>

> 1. Anyone had an MRCP? I am assuming an ERCP is " better " , can give more

details?

=================================

-- I've had both ERCPs and MRCPs within the last month. Each one has

it's own

advantages.

With an ERCP, the dr. has the opportunity to dilate (stretch) any strictures in

the main bile

ducts, take brushings to check for cancer cells, and inject dye through the

ducts so they

can see just what sort of state the ducts are in at the time. It is, however,

limited in that

the dr. can see only from the inside of your esophagus, stomach, duodenum, &

ducts.

An MRCP is non-invasive since it's basically an MRI of the same area. It's

advantage is that

it can also see the areas outside of the organs. In my case, for example, it

showed the

large clot in the portal vein, and also could identify the extent of blockages

inside the

liver, as well as the size of my spleen, liver, etc.

While I was in the hospital last month, they decided to do the MRCP first since

it is non-

invasive. It was fortunate they did, since they discovered that large clot. A

few weeks later

they did another one and found the clots had multiplied like rabbits (but I

think this is

rather unusual), so I'm about to go on major anticoagulant therapy.

With either procedure you have to have an IV going, so be sure you are well

hydrated

before you go in to have it done.

I'm leaving the rest of your questions for others to answer, since I do not take

Urso

(couldn't tolerate it). Hope this helps. Don't hesitate to ask more

questions!!! That's what

this group is here for.

Regards,

Carolyn B. in SC

[Guest guest]

Hi --

I'm a veteran of both the ERCP and MRCPs. As mentioned previously,

ERCPs are more invasive, but they can do things like dilations,

stents, etc. with that procedure that can't be done with an MRCP,

which is just a glorified MRI. One of the big risks with the ERCP is

pancreatitis, which I got after they did an ERCP on me at Mayo last

year. Since I'm scheduled for a live donor transplant on June 17,

they were considering another ERCP, since the last one was done a

year ago, but they opted for the MRCP due to the history. I'll be

going for the MRCP this Friday night, and I can't wait to chug the

tall glass of chalky stuff that tastes like gutter water beforehand.

In terms of Actigall/Urso, a high dose would be considered anything

above 15 mg/kg/day of body weight. I'm at 35 mg/kg/day, and I don't

suffer any ill effects from it.

I was first diagnosed with PSC in 1999 after two years of tests,

scans, biopsies, etc. The Crohns came later, in 2005.

Finally, actigall can't reverse damage. It merely makes the bile

less caustic, allowing it to flow easier with minimal damaging

effects.

Hope this helps.

Tom

[Guest guest]

Hi ,

This is great news and extremely encouraging. I'm so happy for you. Could you please tell me if you have made any changes after your diagnosis that could have helped you to that extent? For example, have you stopped/started eating something, changed your diet (in what way? what do you eat/not eat?), started certain medications (which ones?), etc.? Any information will be appreciated.

Wife of Adam, UC - Feb 08, RUQ pain/itching, skyrocketing LFT's (GGT in 1000 range), undergoing PSC tests now (awaiting MRI results, ERCP pending).

Thank you!

A couple of quick questions

Hello everyone,

This is , the lurker who does not post very much. I am so confused about my psc that I don' t have any answers to most of the questions that are posted. Here are my questions...

1. Anyone had an MRCP? I am assuming an ERCP is "better", can give more details?

2. What is considered a high dose of Actigall?

3. Is there anyone who has been diagnosed for a long time (I was diagnosed in 1995 with psc and crohns), who have been told they have been misdiagnosed or that their liver has actually gotten a lot better over a long period of time?

4. Can the Actigall reverse damage?

I just has my gallbladder taken out 2 weeks, and the surgeon said while he was in there looking around, he looked at the liver which seemed a little fatty, but for the most part normal. He took a biopsy which was found to be fatty but not indicative of psc.

I had an MRCP which was normal, bile ducts were free of blockage and open. In 1995 I was told I only had tracks of the small bile ducts (main duct was ok). This biopsy was the 1st I have had since 1995. In 2002 I had an ERCP with similar results as 95. By the way these are different drs from 1995. My liver enzymes are only slightly elevated now (10 points out of normal range). I have not had any problems with my Crohn's since 1997.

I am going to provide all of this information to my gastro dr, who has followed since 1997. THe surgeon also suggested that I talk to gastro about possibly getting off the actigall.

Sorry for the long post, I am just confused, and happy and scared at the same time. I am 29 years old, and have thought since i was 15 that i was gonna have to have a transplant and only get worse. I feel pretty good for the most part, with some itching and tiredness.

Thanks,