PSC question for Quincy

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Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 4/30/2009 7:55 PM (GMT -6)   
Hey Quincy,
 
I remember you telling me that you were diagnosed with PSC somtime ago...how were you diagnosed, what tests did you GI run on you?
 
I had an MRCP done about 2 months ago and my doctor diagnosed me soon after.  Just to be sure he had a me have a Liver biopsy about a month ago.  I had a an appt with my GI today and he said that the biopsies came back negative of PSC.  So, now he wants to do an ERCP on Monday to see what is going on. 
 
Do you have any thoughts, do you think the biopsies came back negative because labs can only test a small area of the liver from a biopsy?
 
Im so confused!!
Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3
Metamucil Wafers - Once a day
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso
Sunflower Seed & Spinach Diet - Started 4/26/09


UC Dude
Regular Member


Date Joined Aug 2005
Total Posts : 438
   Posted 4/30/2009 9:28 PM (GMT -6)   
If the MRCP showed the "beading" in your common bile duct that is the "typical" presentation of large duct psc.

The liver biopsy is a nasty procedure (had one myself) and it is not definitive as it take a "core sample" that may or may not show signs of psc. Perhaps they wanted to see what "stage" psc you had. If you check out Mayo Clinic's site I think they have the scale on there somewhere.

Have you seen pictures from the MRCP? I would ask why the ERCP is necessary if the MRCP confirmed psc. How much URSO do you take?
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 5/1/2009 3:13 AM (GMT -6)   
I would totally refuse the ERCP as well as the liver biopsy.

If the MRCP showed the classic beading...what's the reason for finding out what stage?

An ERCP can cause side effects such as pancreatitis, advancement of PSC and whatever else.
There are definitely faults to testing...sheesh,and you've already experienced one with the biopsy.

I miss the point of needing to know through some testing...but if the doctor suspects you have a blockage, I guess that would be a reason for an ERCP...but that should be seen in the MRCP or maybe a scan?

I refused the ERCP. NO liver biopsy was offered to me....and I'd refuse that as well.

I'm in early stages as per my last MRCP, and maybe in the next year or so, I may have another one.

The urso has brought down my liver enzyme numbers.   I'd like to know if you are on URSO and what dosage as well.
 
What about the liver enzyme readings...what all has the doc done?
 
The last question...what does the doc hope to gain with all the tests.  UC Dude....is yours confirmed or are they still in a quandry if you have Psc?
 
quincy


*Heather* Status: mild flare enemas tapered to every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

Post Edited (quincy) : 5/1/2009 2:16:24 AM (GMT-6)


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 5/4/2009 5:43 PM (GMT -6)   

Soo I went ahead and had the ERCP (which is totally killing my throat right now) and has you both thought, I do have the PSC. 

I am still on the Urso and my doc mentioned this morning that my liver enzyme levels were perfect, which is a good thing. 

I guess the one thing I need to worry about now is to not have to worry about a liver transplant before I hit 40. 


Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3
Metamucil Wafers - Once a day
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso
Sunflower Seed & Spinach Diet - Started 4/26/09


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 5/4/2009 6:45 PM (GMT -6)   
Wow...sad to hear you have it. So, what dosage of URSO are you on?

I suggest you try to keep the UC under control as best you can...still suggest rectal meds.

what stage is the PSC?


Good to hear your liver enzymes are normal.

quincy
*Heather* Status: mild flare enemas tapered to every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 5/4/2009 7:03 PM (GMT -6)   

Hey Quincy,

I'm on 500mg of Urso 4xday. 

Other then the obvious reasons, why do you suggest I keep my UC under control?  Are PSC and UC linked to hurt one another?

I dont know what stage my PSC is becasue I was still a little woozy when my GI came out today.  I have a follow up appt with him in 3 weeks to find out.

What stage are you in?


Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3
Metamucil Wafers - Once a day
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso
Sunflower Seed & Spinach Diet - Started 4/26/09


UC Dude
Regular Member


Date Joined Aug 2005
Total Posts : 438
   Posted 5/4/2009 9:46 PM (GMT -6)   
PSC and UC are very correlated. I think I read like 70+% of those with PSC also have UC. On top of that the majority are male.

Check out the site pscpartners.org You can get great info and support about PSC there. Good luck... I am still 11 years without a firm diagnosis but have decided to quit chasing it. Mayo thinks it is likely I have "small duct" in the early stages....
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 5/5/2009 1:29 AM (GMT -6)   
Hi...yes, there's a correlation, but for some, they don't know which actually comes first..the UC or the PSC.

I suggest to try to keep the colon quiet...for since PSC is autoimmune, it might become exacerbated if the colon is in a wacky state. I've pretty much always had things under control...or at least able to get my flares under control pretty quickly, and have always been on Asacol and taper Salofalk to maintenance.

As UC Dude comments that the majority of PSCers are male...that seems to be the case, but there have been quite a few females who have come on this forum diagnosed with it.

Mine is in early stages....but there's a slight ponder if I have PSC, PBC (primary biliary cirrhosis) or both. MRCP says PSC, blood tests say PBC...regardless, the "treatment" is the same with the use of URSO. Less for PBC, higher for PSC.
The dosage is so many mg per pound weight.

Definitely check out pscpartners.org.

Do you go back to your doc for any other results? you should, however, ask for a copy of the report.

quincy
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 5/5/2009 5:39 PM (GMT -6)   

Thanks to you both,

Yea, I go back to my GI in about 3 weeks to chat with him about the results.  I'll keep you both updated.


Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
6MP - 50mg - started 5/04/09
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3  
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso
Sunflower Seed & Spinach Diet - Started 4/26/09

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