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
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.
*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
~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 !!!