Many questions

?????????????? Our son was diagnosed April 17 with PSC. Since then he continues to be very jaundiced including the eyes. They have tried Cyproheptad 2mg three times a daily worked for about 7 days then they switched him to Naltrexone 50 mg three times a day this worked for about 10 days now when he was hospitalized they had him on both Naltrexone 50 mg q day along with the Cholestyramine but they discontinued this. He was originally admitted with ? GB issues but after all testing we received this diagnosis but the stents in the liver did not do anything so ? the blockage might be further up Ultrasound showed the gallbladder was distended and per the tech was shaped like a Santa hat or Papa Smurf hat. Any suggestions? He has an appointment on Tuesday and we will ? to see if removing the GB might alleviate some of the jaundice and help with the uncontrollable itching. He has not slept for more than 6 hours in four days. He has taken Epson salt baths, oatmeal baths lotion from top to bottom but he has "the suicide itch" even with taking his meds that is why they keep changing them

Your sons discomfort sounds extreme. Complications vary depending on where blockage is, and if complete, or partial. I can share things I’ve done for relief with my physicians help, and supervision…bowel rest, hydrating well, avoiding all animal food products, and morphine drops at night. After a few days, to a week, I feel better.

Can he take Benadril perhaps or steroids? Just for some temporary relief.

When the itching on my legs started to drive me crazy, my dermo prescribed a steroid whose name started with Mome...

Can't recall the full name.

I used it for about two week in February and it was a life saver. My legs rarely itch now.


they have tried him on both but no luck. We have a call out to his MD he has been up all night diarrhea, nausea and vomiting so here is hoping they can help this has not happened before. thanks again

ursodoil worked for my son

For me, a night of diarrhea, nausea, vomiting, and intensified symptoms meant the beginning of a cholangitis attack/infection. This doesn't always show up in blood work. ERCPs and stents can often cause these infections to happen. Push for antibiotics to see if it helps. If he is running a fever or has chills, go to the ER (preferably a teaching hospital or one associated with a transplant center).

he jjust finished a course of antibiotics however; my husband is in the ER with him right now Thanks

My doctor has prescribed doxepin off label use. It has helped me get 6 hours of sleep most nights. Benadryl helps. Some itching during the day.

I would encourage you to ask his doctor about taking Rifampin 300 MG twice a day. This is the only thing that has controlled my itching for 4 years now. All those potions and lotions I tried didn't really help. It's those bile salts under the skin that cause most to itch. I hope he can find relief. If you haven't already done so, I would encourage you to find a good Hepatologist who is a doctor who specializes in liver disease. A good teaching hospital or major trauma center with a transplant section would be a good place to start.

Best Regards to Him,