Questions on ITCHING and how to help my daughter!

It’s totally possible. The doctor who did my pancreatitis ERCP apparently specializes in the procedure and works with the new spyglass system. I think it was just a bout of bad luck.

As for a hepatology specialist, I’m seeing one who is part of the transplant team. She gets together once a week (I believe) with the other specialists to discuss special cases like mine and she sees a few other psc patients. My GI is Dr. Marlon Ilagan and he specializes in hepatology as well. Check out his website ( I think I’m pretty covered with a large team taking care of me, and they are all in touch with each other, which makes me happy as well because with all that is going on its pretty hard to be a messenger. Not sure what else to do, really, aside from getting an MD when I pull through this because of all the research I’ve done!

Great Report Nomad2040. Glad to hear you have got a good team working with you. I just always try and be sure people are seeing the right kind of doctors. You would be surprised at some of the horror stories I've heard about. I wish you the very best though as they continue to monitor you and hopefully get you on the list at the right time. This site has been a little quiet of late, but hopefully others will chime in on your post with other thoughts as well. Take care.


PSC 2011 / Liver Transplant 7-2015


Just saw your discussion on your daughter's itching. Have you found a solution yet to get this under control. Let me know if you need further information and I'd be glad to share what got my itching under control. I see many responses and you may have the problem solved. I hope she will find relief and trust she's under the care of a good hepatologist associated with a transplant center. That will be the best decision you make early on for her continuing care. The very best to you both.

Mark Wilson, Moderator

PSC 2011 / Liver Transplant 7-2015

Hello. I did not understand. You had eczema because of PSC or eczema happened separately. I am asking because my wife has the same situation. bilirubin level in her blood test is not very high but she experiences very severe itching.

In my personal experience the itching was/is caused by bile salts/acids & can happend even when the Bilirubin levels are not really high. I think itching shows there is a slowing or blockage in the flow of bile.
When I was pregnant I had cholestasis which caused intense itching (same as I get now with cholongitis) then my bile salts where high but my bilirubin levels where not.

Has anyone tried naltrexone for itching? I have tried altering my diet, rifampin, cholestyramine, Zoloft and every cream imaginable. The itching is getting unbearable and recently I was prescribed naltrexone but I am having a hard time staying awake the next day after taking it. The itching has caused bruises all over my body from doing it non stop and even when I am sleeping. My doctor is out of ideas after this so any help would be appreciated greatly !

Briar, my demo once recommended metronome, a steroid cream. It worked: I recommend it.

Two things that work for me is:

  1. avoiding trigger foods such as high fat foods and caffeine
  2. Drinking a lot of water each day (maybe 3-4 Litres, I haven’t measured) I think this works by both diluting the blood and also ensuring the bile ducts are expanded and bile is less thick.

I was diagnosed in 2017 for PSC. I just started 2 months ago with uncontrollable nights sweats. I noticed you mentioned that you deal with that issue also. Is this a symptom a lot of people get with this disease? I have uncontrollable debilitating itching for the past five years. I just started chlorestyrime 2 weeks ago. The itching has been reduced by 60% already.

Please try Vancomycin. Colysteramine is just a ‘blanket’. Please check all the posts on the oral Vancomycin treatment for PSC (and PSC+UC).

Best wishes,

Thank you, I will discuss this with my doctor. Best wishes!

Ask your doctor about Rifampin. I was on 300 mg twice a day for 4+ years pre-transplant. For me, it was the only thing that brought the itching under control up to 98%. Every patient responds to treatment for itching differently, so you may need to try several options before you find what works best for you. Good luck.

PSC 2011, 2021 / Transplant 2015

Thank you Mark. I was on Riframprin for 2 yrs when first diagnosed. It did help my itching but made my migraines intolerable. How is everything going post transplant?

Do you still have the itching? Any new successful treatments? I have tried everything you mentioned. I am now on my last hope cholestyramine. It worked for 10 days now not so much.

Thanks for your note. Sorry you are still dealing with the itching and then the side effects with Rifampin. I trust this latest treatment will bring some relief. As far as your question post-transplant, everything was doing great for 6-1/2 years but this past September I had a blockage at the anastomosis, this is where the new common bile duct connects to my small intestines at transplant. Scar tissue had formed there and caused a blockage in the bile duct. I have had 9 interventional radiology treatments where they go in through my liver and bile ducts to unstop the blockage leaving a biliary drain in that I flush several times a day. Have spent around 20 days in the hospital due to this since September, most recently 8 days in a row with 2 surgery procedures. Go back on Wednesday for another one. But, very thankful I’m still here and living life. On top of all this I was just diagnosed with recurrent PSC. Thankfully we caught it in the early stages and I have started Vancomycin. I’m hopeful it will help slow the progression of the PSC down for a long time. Take care and a very Merry Christmas.


Have you tried Momesota? My Dermo prescribed it, so it is not OTC. It stopped about 75% of my itching within 2-3 days.
I used to swear by it.

Hi everyone. I am not sure if I’m in the correct thread, but I was wondering if anyone experienced some of the scary side effects of antidepressants prescribed to help with the itching. I was only diagnosed a year ago with PSC and UC. I am already on Urso and Mesalamine. Chloestyrmine worked for me for a time, but left me severely dehydrated and ceased being effective. My heptologist has now prescribed me sertraline (generic Zoloft) to reduce the unbearable itching, but I am scared to take it. I am also concerned about pregnancy in the future and what will happen if/when I withdraw from the medication. Anyone have experience with side effects of antidepressants?

Also, I’m in my early 30s and the doc says I shouldn’t need a transplant for maybe 20 years…she also wants to hold off on ERCPs until necessary.

Thanks for your post. I can certainly personally attest regarding Zoloft. For me, it really messed with my thinking and wasn’t worth it. I tried it for a week or so and then had to go off of it. My hepatologist then prescribed Rifampin 300 mg twice a day. This is the only medication I tried that would eliminate my itching by 98%. Every patients response is different but for me it was a lifesaver. The itching will about drive you crazy enough, you don’t need an antidepressant to make it worse (in my humble opinion). Rifampin was originally made for treatment of Tuberculosis but it’s off label use for the itching worked wonders for me. I took it for almost 4 years. Good luck.

PSC 2011 / Transplant 2015

A number of years ago, I went to a dermotologist who recommended Momesota, a steroid-based cream that was somewhat tricky to use. But within two day, it did beautiful an quick work.
I highly recommend it.

I tried so many things and then asked my dr to prescribe setraline(Zoloft). Once I got up to 100mg, the itching stopped and it has been almost a year after many years of torture and lack of sleep.