JUST DX WITH PSC !

 Went for my routine c-scope two weeks ago. dr said all looked "PERFECT". No inflamation or signs of UC. He stated "You are in remissiom." Great. Went back to see him today for the routine follow up and he informed me that I have PSC. Now I am trying to make a very long story short. He dx this by doing blood work and saw I had certain elevated liver functions. He said he could do an ERCP but even if it did prove PSC there is nothing that can be done. It's not treatable or curable. So his approach is to just monitor this condition and wait and see how it progresses. I have to add here I do think he is a good GI and do respect his decisions (to this point).

 PLEASE tell me what would you do now if you were in my position?

I'm so sorry for the new diagnosis. I know we have others here with PSC, hopefully they'll respond to you soon. My understanding is that the better you keep the colon inflammation under control, the better your liver is likely to do; I hope I'm right on that.

primary sclerosing choleangitis ~ I googled it. They can do things in the long term, like balloon opening bile ducts. (((((((((((((((Big hug))))))))))))))))))))

 Just to add aside from slightly elevated liver functions I don't have any other symptons at this time. I'm not sure what functions are even elevated. I did however call my GI and asked for copies of all my test results and plan to get that second opinion. I have had these ELFs since about 1991 but no Dr could figure out why. Over the years I have been given many tests to try to identify the cause. All tests came back neg. except the blood work. In 2004 I was dx with UC. This may be the root cause. I may have had Uc all that time and never did it rear it's ugly head. I must admit it's upsetting but I don't think it's the time to panic.

 I am trying to find a forum about PSC but cant seem to locate one. I thought HW had one. If anyone knows of how I can locate it please let me know.

 Thank you all for you input and well wishes. It sure helps to talk with people that understand.

Just wanted to add i just got back from the dr and i have a possible diagnoses of PSC as well.  I have a bile duct infection and they are going to start blood work and tests to get the ball rolling. 

Ugh.

  Now I'm really confused. As stated in my first post I asked my Dr for copies of all my tests. I received them today. After looking them over "to me" things just dont add up. Colonoscopy report was as he stated "PERFECT" even says "Remission". Looking over my blood work everything is in range. I paid direct attention to my "Hepatic Function Panel". Again all are very much in range with the exception of my AST. Normal is 10-35 mine is 40. I just don't understand how he can give me a dx of PSC, but then again I'm not a Dr.

Any thoughts ?

Good news and bad news... According to Wikipedia about 70% of people with PSC go on to develop UC, so (assuming you do have PSC), it's likely PSC came first in your case. Weirdly, only about 4% of people "develop" PSC. I'd have thought your doc was a bit premature to be so confident of the diagnosis...

Quote from British Liver Trust re PSC diagnosis: "PSC is diagnosed on the combination of symptoms, blood tests and a picture of the bile ducts, called a cholangiogram. A liver biopsy may be needed not only to confirm the diagnosis, but also to assess either how early or advanced the disease is. If your GP suspects you may have the condition you will be referred to a hospital specialist for tests, expert advice and treatment. The specialist you may see could be a gastroenterologist (digestive disease specialist). "

http://www.britishlivertrust.org.uk/home/the-liver/liver-diseases/primary-sclerosing-cholangitis.aspx

Good luck to you (and Vin as well).

I would seek a second opinion from someone who specailizes in it. take care.

 Quincy,

       Had an MRCP done 2 years ago. Showed nothing, stated "Normal MR cholangiopancreatogram" Had ultrasound done in July of this year this test stated...

"The portal vein is patent and demonstrates normal direction of flow. There is no intrahepatic biliary ductual dilatation. A normal caliber common bile duct is noted...."

Biopsies on c-scope all stated "No Dysplasia"

He did mention URSO but said something about it not really being for PSC, didn't really catch what he was saying because by now I was practically under the table with fear.

 Thanks to all for your advice and input. Anything further would really be appreciated. Thank God I found this site. I find it extremely helpful.

Apparently, it's a higher dosage for PSC, lower dosage for PBC. Since Ive been on it, my liver enzyme tests are normal...except for the cholesterol, which seemed to be another symptom of PSC...


I'd still totally nix the ERCP, even though they may do them daily. Unless you have a blockage...maybe...but not for just a look-see with the possible side effects. Oh, and if they put a stent in...you have to have another ERCP to have it removed...

Not good enough for a fatal (but not terminal) disease....that's autoimmue and can quicken on its own with a trigger that could have been avoided.

Wow, can you tell I don't support them?

I do, however, suspect/believe that keeping one's UC controlled as well as possible can help in keeping the psc quiet/from progressing.

Do the homework...and if you believe you've done enough...do more. At least arm yourself with enough questions to make an informed decision at the options available. URSO is a bile acid, and at least will help keep the bile free flowing.

Oh..don't know if Milk thistle is a extremely helpful...I'm taking it anyway.

Just don't drink to any excess...or often.

quincy

got my results back today. all my liver levels were normal with the exception of ALT which was a 57 and normally is supposed to be no higher than 55. He considered it basically normal and said it was likely nothing to worry about. He is going to check it again next month.

Thoughts? I think its pretty good news :). Just have to get this flare under control and ill be back on my way.

Vin

It could be, plus the plethora of other drugs i was on, or have been on in the past 3 weeks. My doc just wants to keep an eye on it for the future, my next blood work test is in november. I guess at that point since i will be lower on the pred, and further removed from all the hospital drugs and drugs i was taking my first week out, that would tell me if it was all the other drugs or not. I would think that if it stays slightly elevated, then he might want to get the mrcp just in case in the future. but im not too worried about it right now as its very close to normal and the other potential contributing factors.

ugh, this latest flare really bites. I just dropped my prednisone the other day from 25 to 20, and i had some major nasty cramping, gas, and strong urges to go last night. Hopefully it levels out over the next day or two so i can keep moving down on pred!

Vin

quincy said...
so, tell me again why you're not taking any rectal meds?

When you taper the pred...try alternating.
eg...25, 20, 25, 20, 25, 20, 25, 20, 20, 20.....
do the same when going to the rest..

keep us posted.
q

my dr. JUST put me on rectal meds today.  I am picking up the prescription on the way home from work.   he also doubled my 6mp dosage from 50 to 100.  so i will see how that goes!  he said my case is pretty severe as it covers the rectum, sigmoid, descending, and transverse colon.  and i am feelin alot of upper abdominal pain this time.  ugh.  can't wait for my next colonoscopy in another month to see whats going on in there.  he was also saying that i will at some point probably have to have surgery, but he wants to exhaust the 6mp option first and see how it goes.  as of this point, and how sick ive been in the past and this time, i say bring it on!!!! :)

I've tried alternating pred in the past and it screwed me up as far an energy levels went and feeling crummy.  it was easier for me to get 1 mg pills and just taper slowly from there.   but usually when i taper by 5's, ill get a relapse period of 1-3 days with increasing symptoms but on day 4-7(depends on what level of pred im at), ill normalize up and then its time to cut again.  i've learned to listen to my body with tapering. 

I'll keep everyone updated!  i am hoping i can start feeling well again soon. 

i wonder how pooper is doing with his second opinion?