Quincy are you being treated for PSC - high liver enzymes

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okiemom
Regular Member


Date Joined Sep 2007
Total Posts : 104
   Posted 10/18/2007 10:28 AM (GMT -7)   
someone had said that you had this from UC. 
How did they decided that is what it is?
 
Sorry,  I am on pins and needles waiting for doc to call me tomorrow.
 
I need to back away from the computer or I will have myself all in a tessy!!  LOL
Diagonsed with UC in about 99 - 
Started new GI 9-25-07
Lialda 2.4 in AM(started 9-26-07) canasa 1000mg  2xs per day(started 9-26-07)
Probiotics, calcium with Vitamin D, slow release Iron, Psyllium Husk Fiber. 


quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 10/18/2007 12:30 PM (GMT -7)   
Hi...It was suspect I had it over 10 years ago based on my liver enzyme increase. My GI sent me to another GI who also specialises in liver disease and he wanted to do an ERCP on me because they suspected I had PSC. I wasn't to go on the internet..lol...didn't have it at that time, but my best friend works at the community college library and got me a stack of information over 2 inches thick.

I spent my time hilighting all the pertinent information and was really bummed out at the prospect of the consequences of having it.
I did find one paper that a doctor had written about having the ERCP and that it could actually trigger the disease into active state (if it was at that time in the early stages)...he also stated that since there's no cure and the disease is fatal, better testing has to be sought. As well, pancreatitis can also happen from the ERCP. I already have some experience regarding that..my sister had 3ERCP tests done and has chronic pancreatitis. But, she produces stones without a gallbladder and had her pancreatic duct blocked. The had to be removed via the ERCP anyway..but one has to wonder what causes what as well. I wasn't ready for those possible consequences at that time in my life.

With that information, I informed the specialist that I was refusing the ERCP at that time and forever. I didn't care....and if I turned yellow..OK. He agreed, and stated that since I'm not male..I probably don't have it. I told him stats mean nothing to me and aren't a source of comfort because I don't seem to follow stats based on my past issues.

My GI and GP monitored me religiously and eventually the MRCP (MRI) came about to test the liver and I went for that. It confirmed PSC in early stages. So....it probably hasn't changed much in the 10 years, which shows me I made a good decsion in not having the ERCP.

In saying I'm positive visually for PSC....my GI also did marker tests or autoimmune disease and for cancer. I tested high for PBC which is primary biliary cirrhosis. So, I don't know if I have both or can even have both..but the treatment is the same...URSO.

High dosage for PSC, lower for PBC...I'm at the lowest for my weight for the PBC and my liver enzymes are now NORMAL. I still have a higher cholesterol..which is actually a symptom of PSC or PBC.

I am really telling you to do your homework and put out a plea for others who have had testing for PSC and what they would suggest. I would say to initially do NOT have the ERCP..well, I'm pleading you to have the MRCP first. If there are blockages, you'll have to have it anyway..but at least it's not for an exploration, but for an actual procedure to unblock an area.

Do your homework....and I know it will be overwhelming. But, this is one time you must know what you're dealing with.

There is a site
www.pscpartners.com
that can help with information and resource. Look at their newsletters and even print them if you must for reading later.

Make conscious decisions about your treatment/testing. I have absolutely NO regrets regarding my decisions at all..NONE.

Keep me posted for sure.

Hang tough..
quincy xx
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 10/19/2007 3:13 PM (GMT -7)   
Did the doc call?

q


*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


okiemom
Regular Member


Date Joined Sep 2007
Total Posts : 104
   Posted 10/19/2007 10:55 PM (GMT -7)   
NO - the doc did not call me! I even called to make sure the GI's office was open till 5 on Fridays - and they did not close at noon like other doctors do.
WELL at 4:30 I called and got the answering service.

I have had high liver enzymes for a long time. The way I found out about it was when I went donate blood they told sent me a letter telling me due to my liver enzyme level they can not accept my blood.

I have mentioned to the other docs I have seen, but nothing more was ever deemed that much.

Well when I told this GI about it he marked the box to have it checked when he had all the other blood work done. The only thing that came back odd was high liver enzymes. I have read that it can be high from being over weight.
That I have been all of my life.

I have only read the little on the PSC - that causes high liver enzymes.
I am not yellow- not sure what you mean by that. I do know that after my colon test Wednesday they sent me for an ultrasound and she kept trying to get a picture of my insides= she was all business and would not say anything about anything. It was just hurting because I had already went almost 48 hours by that time with out eating and I hurt.

I am hopping that it is a good sign that he did not call me - but then I had to remind him the day of the colon test that he was going to talk to me about the liver enzymes - or at least that is what the letter he sent me said.

thanks for the reply quincy
Diagonsed with UC in about 99 - 
Started new GI 9-25-07
Lialda 2.4 in AM(started 9-26-07) canasa 1000mg  2xs per day(started 9-26-07)
Probiotics, calcium with Vitamin D, slow release Iron, Psyllium Husk Fiber. 

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