Has anyone come up with a way to help with the itching? I have been awake for 31 straight hours from vomiting and itching. The vomiting I can handle because I can sleep in between, but the itching has gotten so bad that I am losing my mind. My doctor said it’s from an internal source so there is nothing he can do.
Sorry to be the bearer of bad news but your doctor is wrong. The itching (pruitis) is caused by a build up of bilirubin in the blood which causes some folks to experience itching. Some with high bilirubin blood reports do not and it is not understood why. There are other threads in this forum about itching and remedies that folks use. My partner takes cholestyramine in a powder drink form which helps somewhat. He says it tastes awful and the itching needs to be pretty bad for him to want to drink it… But that is him. I think if he took it more often he would stop ripping holes in his skin… but I understand that he needs to make that decision based on how he feels. Cholestyramine is a perscription. Your doctor should know about itching and liver disease and be able to suggest remedies to try. I’d change doctors, I think. That is not a good sign. I know there are others PSCers that use other methods. Warm baths are soothing for my partner too. Sometimes I just give him a massage which seems to sooth also. Search the threads here for itching and pruitis and you will find other answers. Best of luck to you for relief! It can drive you crazy!
My doctor prescribed doxepin. It has helped especially at night.
My husband also suffers from intense itching (that prevented him from sleeping). His GI doctor suggested that he take benadryl. Full dosage was too strong for him, so he is taking half (25mg). It helps him sleep through the night, but it elevated his blood pressure. I would like him to go off of it, and wondering if there is better alternative to it.
His doctor prescribed Cholestid back in December 2014, but he went to ER after taking it for two days. I don't know if it was the cause of his high fever, but we decided that we want to stay away from it.
It sounds like you've got the itching bad. I'm sorry to hear.
My Dr has tried maybe 6 different medications to address the itching. Some have seemed quirky to me -- like Zoloft -- but they've been somewhat effective with me. I've also been on Rifampin which is an old TB anti-biotic, Cholestyramine, and I forget what else.
None has worked for more than a few weeks or a couple of months, but they have given me relief. The most reliable combination for me has been 1) oral anti-histamine -- I almost never take the non-drowsy formula, always the other -- 2) topical Benadryl for bad patches like my calfs, and 3) oils and lotions.
Finally -- and it is a paradox -- when it is bad, the itching does keep me from sleeping, but the reverse is also true: when I get too tired, the itching is worse. That means that I can get into a bad cycle, but it also means that if I practice good self-care, go to bed before I get too tired, etc., I avoid some of the worst itching that I have sometimes experienced. But of course, that is only effective when I am not already in the worst periods of itching I've had.
Hope this helps.
Elevated phosphorous in the blood of PSC patients is also a cause of dramatic itching. I take a Tums before and after every meal in order to bind the phosphorous.
Have your Dr. check it and if yours is high, do a search on the web for blood phosphorous. Stay away the foods and drinks high in phosphorous.
I certainly can feel for you as I experienced the same thing. My doctor gave me a medication which upset my stomach and really did not help the itching. One day I found a jar of vicks vaporub in my bathroom and in desperation I put some on. It really helped the itching and the best thing was that it stopped the itch from spreading. I told the doctor and he said they were investigating camphor to help itching and vicks vaporub has camphor in it. I don't know if this will help you but it did me. The itch did disappear when my psc worsened. I hope that you get some comfort as I know it is no fun. Hang in there, I am Rooting for you.
MENTION THIS DRUG TO YOU DOCTOR CHOLESTYRAMINE AND I HISTAMINE CREAM WORKS AND IF YOU CAN A NATUOPATH CREAM WITH LAVENDER IN IT PURE ORGANIC LAVENDER I FIND IT SETTLES THE NERVES DOWN FROM ITCHING I HOPE THIS HELPS THE ITCHING THERE SOLUTIONS TO THIS YOU NEED TO GET IT UNDER UNTROL BECAUSE THE ITCHING CAUSES SORES AND THEN YOU CAN GET INFECTIONS CONSIDER WEARING GLOVES TO BED I WAS TOLD WE INCH UNCONSIOUSLY WHILE WE SLEEP,,,,
Back in February, my dermo prescribed mometsoma, a steroid-based cream. I used it for maybe two weeks, and I swear by it. It has cut the itching from horrible to livable, maybe reducing the itching by 90-95%.
I can tell you what has kept my itching under control since diagnosis in 2011. I know others will have differing opinions which is fine. This has just really been a life-saver in my situation.
My hepatologist prescribed a drug called Rifampin. I take 300 MG twice a day. It's a little on the expensive side but it's the only thing that got it under good control. It's the bile salts under your skin that causes all the itching with liver disease.
I hope this helps.