JUST DX WITH PSC !

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Pooper Bowl Champ
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Date Joined Jan 2008
Total Posts : 68
   Posted 10/8/2008 4:02 PM (GMT -6)   
 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?
DX Pancolitis 3/2004
Colazol (Generic) 3 tabs 2x a day.
Levothyroxine .137 for Hypothyroidism
Multivitamin


Sunshineonmyface~
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Date Joined Sep 2008
Total Posts : 202
   Posted 10/8/2008 4:04 PM (GMT -6)   
what is PSC? Congrats on being in remission.

jujub
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Total Posts : 10407
   Posted 10/8/2008 4:43 PM (GMT -6)   
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.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


bbc
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Date Joined Mar 2008
Total Posts : 1580
   Posted 10/8/2008 5:28 PM (GMT -6)   
What's causing PSC...the anti inflammatories?
 
Congrats on the new scope findings!


Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!

Post Edited (bbc) : 10/8/2008 5:41:38 PM (GMT-6)


Sunshineonmyface~
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Date Joined Sep 2008
Total Posts : 202
   Posted 10/8/2008 5:58 PM (GMT -6)   
primary sclerosing choleangitis ~ I googled it. They can do things in the long term, like balloon opening bile ducts. (((((((((((((((Big hug))))))))))))))))))))

Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/8/2008 10:34 PM (GMT -6)   

Well, how are your symptoms?  Do you have any abdominal pain, itching, fatigue, jaundince? 

I'd also be sure to get a second opinion from someone else about it.  It probably needs to be confirmed by more than just a blood test.  It can mimicked by alot of other diseases.   

If confirmed, you are going to have to be very liver friendly about diets, and healthstyle. 

Start researching your options and see what you can do. 

Keep us posted and good luck. 


UC since age 22, now 27.  Several huge flares since then.
 
Currently tapering prednisone(35 mg from 80 mg).  Also just starting 6mp again and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


Pooper Bowl Champ
Regular Member


Date Joined Jan 2008
Total Posts : 68
   Posted 10/9/2008 8:07 AM (GMT -6)   

 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.


DX Pancolitis 3/2004
Colazol (Generic) 3 tabs 2x a day.
Levothyroxine .137 for Hypothyroidism
Multivitamin


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/9/2008 8:30 AM (GMT -6)   
It most certainly is not time to panic at all.  Your doctors non-chalant attitude towards it is indeed disturbing because even if you has PSC, there are treatments to slow it down.   I'd be absolutely pro-active and start getting some answers!  
 
The good thing is at least you have no symptoms, and your colitis is contained so the complications are non-existant right now.   Gives you plenty of time to get this all straightened out and in good health :). 
UC since age 22, now 27.  Several huge flares since then.
 
Currently tapering prednisone(35 mg from 80 mg).  Also just starting 6mp again and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/9/2008 11:50 AM (GMT -6)   

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.


UC since age 22, now 27.  Several huge flares since then.
 
Currently tapering prednisone(35 mg from 80 mg).  Also just starting 6mp again and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


Pooper Bowl Champ
Regular Member


Date Joined Jan 2008
Total Posts : 68
   Posted 10/9/2008 12:22 PM (GMT -6)   

 Vin,

    Just read your post. PSC seems to be popping up in several UC'ers. I guess it goes along with the dx. Hope all goes well for both of us. Stay in touch, lets ride this one out together.

 I now have appointments with a Hepatologist and another GI. I will do everything I can to "SLOW" this down. I will keep you posted.


DX Pancolitis 3/2004
Colazol (Generic) 3 tabs 2x a day.
Levothyroxine .137 for Hypothyroidism
Multivitamin


Pooper Bowl Champ
Regular Member


Date Joined Jan 2008
Total Posts : 68
   Posted 10/13/2008 10:33 AM (GMT -6)   

  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 ?


DX Pancolitis 3/2004
Colazol (Generic) 3 tabs 2x a day.
Levothyroxine .137 for Hypothyroidism
Multivitamin


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/13/2008 10:57 AM (GMT -6)   
Get a second opinion dude. With something like that, you need to make SURE. liver levels will most likely be elevated, and if your in the normal range then i am not sure whats the deal. and even if your liver levels are high, it still might not be PSC. alot of things can make your liver levels high. you will need to get scoped to be sure.

I am anxiously awaiting my blood work. i should get it back by weds the latest i am hoping!!
UC since age 22, now 27.  Several huge flares since then.
 
Currently tapering prednisone(35 mg from 80 mg).  Also just starting 6mp again and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


Limeycricketlover
Regular Member


Date Joined Oct 2008
Total Posts : 67
   Posted 10/13/2008 11:41 AM (GMT -6)   
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).
UC - diagnosed Sep 2008
Seeing GI for first post hospitalization consultation Oct 9th - should get full diagnosis then

Omeprazole 40mg
Prednisolone 20mg
Calcium (Adcal-D3) 3000mg
Mesalazine 4000mg
Mesalazine foam enema
Multivitamins
Probiotic (acidophilus)
FOODS FOR ME TO AVOID:
Any types of green leaf - big time.


Several questions
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 10/13/2008 11:47 AM (GMT -6)   
I just started a "new post" with excellent sites that should help you out.
Sandy

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/13/2008 2:07 PM (GMT -6)   
I would seek a second opinion from someone who specailizes in it. take care.
Beth, 33 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07.  Flare May 08 (from aspirin?).
UC dx'd 03/00 Proctosigmoiditis; Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07. Close to remission since 9/08.
Prednisone 5mg/2.5mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 10/13/2008 2:11 PM (GMT -6)   
DO NOT HAVE THE ERCP or LIVER BIOPSY until you have had an MRCP!  MRI for the abdomen with focus on the liver, gallbladder and pancreas.
Blood testing doesn't confirm it....it will lead to suspicion, but doesn't confirm.

interesting your doc mentioned you HAVE it....
 
Were your biopsies for the c-scope all clear?  Congrats by the way!

Do the homework...but please don't have the ERCP firstly!
It can trigger the disease active if you're in the early stages and can cause pancreatitis.

Did he mention anything about URSO?

quincy


*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  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 !!!
 

Post Edited (quincy) : 10/13/2008 2:14:52 PM (GMT-6)


Pooper Bowl Champ
Regular Member


Date Joined Jan 2008
Total Posts : 68
   Posted 10/13/2008 2:54 PM (GMT -6)   

 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.


DX Pancolitis 3/2004
Colazol (Generic) 3 tabs 2x a day.
Levothyroxine .137 for Hypothyroidism
Multivitamin


UC Dude
Regular Member


Date Joined Aug 2005
Total Posts : 438
   Posted 10/13/2008 7:58 PM (GMT -6)   
check out www.pscpartners.com for more info than you ever need. I would get a follow up with a liver dr. if you can... Hepatologist. How close are you to Mayo Clinic? That is where I have gone. If you really need an ercp they do them everday... like changing the oil in your car...

Keep in mind this disease progresses very slowly. The urso is thought to be able to slow it even further. I was told it was possible that I would die a natural death before I would need a liver tx due to the psc... don't freak out. (too much) Do your research and feel free to ask a lot of questions. Quincy, myself and others have lot's of time invested on psc.
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 10/14/2008 12:13 AM (GMT -6)   
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
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  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 !!!
 


UC Dude
Regular Member


Date Joined Aug 2005
Total Posts : 438
   Posted 10/14/2008 4:30 AM (GMT -6)   
The interesting part is that they want to call it psc without any proof. They could not find "proof" with mine and instead said it was likely...

There is also the "small duct" vs. "large duct" presentation. Small duct is harder to dx. Large duct appears as beaded in the common bile duct and is easy to see in an MRCP, ERCP and perhaps ultrasound.

I have had 4 ercp's a liver biopsy many ultrsounds and no formal dx. Go figure. Been on URSO for 3+ years.
Mayo said go live your life and we will deal with it if it becomes an issue for you. :)

Dr. Menon was the Hepatologist I saw at Mayo. Awesome Dr. in my opinion.
 


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/15/2008 5:21 PM (GMT -6)   
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
UC since age 22, now 27.  Several huge flares since then.
 
Currently tapering prednisone(35 mg from 80 mg).  Also just starting 6mp again and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 10/15/2008 10:20 PM (GMT -6)   
perfectly good news. Could also be the pred or 6MP that increased the ALT?

If all your other tests were in the normal range, having regular checks would be the best.

My highest was 76....after I started URSO, the lowest was 37.

It's only one test of many...I wouldn't worry about it yet...and certainly not to have any other tests except an MRCP (which could take a while to get the appointment).

As well, the MRCP would set a nice visual baseline....oh, and if you have it done, you could ask for a copy of the CD...it'll cost, but worth it to have for future records, and of course...curiosity.

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  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 !!!
 


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/16/2008 6:28 AM (GMT -6)   
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
UC since age 22, now 27.  Several huge flares since then.
 
Currently tapering prednisone(35 mg from 80 mg).  Also just starting 6mp again and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 10/16/2008 1:33 PM (GMT -6)   
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
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  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 !!!
 


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/16/2008 1:45 PM (GMT -6)   
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?



UC since age 22, now 27.  Several huge flares since then.
 
Currently tapering prednisone(35 mg from 80 mg).  Also just starting 6mp again and lialda.   I definately am not liking these drugs.  Maybe surgery one day?

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