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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Prednisone and itching


#1

Hello all it’s been a long time since I’ve logged in and commented on my PSC.
At 57 years old I’m handling my PSC with 500 mg Urso twice a day, and cholestyramine 4g as well.
February of 2017 liver level skyrocketed, itchy like hell, no relief to be had except sit outside in the cold in a T-shirt and my skin calmed down along with a daily dose of Antihistamines.
It got so bad I was losing my mind! My family doctor gave s hot of prednisone in my butt! It helped very little. I waited for my appointment with Dr Fung at Toronto General hospital for 3 months and in the mean time I got worse.
My family doctor gave me a 3 week oral supply of prednisone starting at 40mg being reduced by 5 mg every 2 days. Bingo! I had the energy and drive of a 20 year old!
Once seeing the hepatologist at TGH I was advised that PSC doesn’t typically react that well to prednisone.
I had to undergo new tests as a result, because they now questioned my diagnosis that I was given in 2010.
After all the tests, they still felt PSC is the diagnosis still.
But all my liver levels are almost normal and no itchies since!! Yes!
I guess we see how long this lasts. Anyone else have similar reaction to Prednisone ?


#2

I also had a positive experience with oral prednisone. I was pregnant and the itching was unbearable! The prednisone was a lifesaver! I was prescribed by my MFM/OBGYN and my heptologist was on board with it, however he said it’s just a Bandaid since it can’t be used long term.
But I have to say it made my life so much better!


#3

Did you have cholestasis in pregnancy? I did for all 3 of mine and it was horrible.


#4

Yes I did! With both. It was so bad that I have decided to not have any more babies! Wasn’t it terrible?? With my first son, I did not have PSC. It wasn’t until
After he was born that I discovered my levels were still or of wack. With my second son, I got the cholestasis at 15 weeks and struggles throughout the entire pregnancy with bouts of itching. It was miserable. May I ask were you diagnosed after having children? I have been told the PSC may have been promoted by my body reacting to being pregnant. After the birth of my second son, I showed scaring in my ducts that was not there before. When I was diagnosed with PSC it was small duct, now it’s evolved in to large duct.


#5

Having Cholestasis in pregnancy was the worst. I had it for all 3. There was lots of exhaustion and many sleepless nights. I recall freezing myself just to subside the itch. I was not and have not been officially diagnosed with PSC and I am 36 years old. The only thing I know is that my troubles started in my teens. I remember being sick from my stomach and being hospitalized for pain in the abdomen at around 12 years of age which now in hindsight makes sense for it to have been problems with my bile duct. There was never a diagnosis for why I got so sick at that time. I had my gall bladder removed at the age of 16 and then was officially diagnosed at the age of 21 with PSC but then told at 29 that the PSC was a misdiagnosis. They said they suspected I had an autoimmune disease but not sure what type. At the age of 36 I went for a general check up because my body had been bruising and found out I have liver cirrhosis. They are now revisiting PSC along with an autoimmune disease. It has been a long journey.


#6

I’m sorry I don’t believe I ever replied to this last thread. I’m so sorry to hear that, this disease along with other autoimmune diseases are so difficult to diagnose. I was first diagnosed with small duct but in just 1 year it has turned in to large duct. Very scared every time I get a MRCP or what they will say. Sending you positive vibes…


#7

Thanks for responding :slight_smile: I am going through a situation where the gastroenterologist says absolutely positively PSC. My hematologist says he doesn’t think so because the MRCP showed no scarring. However, upon returning to gastroenterologist he says the reason the hematologist said it is because they failed to check the small bile ducts. It was the first time I have heard of small and large bile ducts. I didn’t even know we had two kinds. He said there is a different test besides the MRCP to show the small bile ducts. What test did they do on you to diagnose the small ducts? Thank you for the best wishes. I wish you all the best too. Where are you in your PSC journey?


#8

Hi Heaven5entu,

Liver biopsy is the only way to test for it. They take a sample of your liver and then look at it under a microscope to look for evidence of psc. It’s a bit of a hit or miss test as the small bile ducts may be affected by varying degrees in small duct psc.