PBC itch

[Samanthaann]

Hi all, does the PBC itch come from the PBC or the urso? Does the itch come and go? Are there things that can trigger the itch? Thanks in advance for your feedback. 🩷

[DonnaBoll Administrator]

Boy, this is a big question for many... and really deserves a lot to say about it. One of the effects of PBC is the itching. This may well be a symptom some experience prior to diagnosis along with the fatigue many have. I strongly suggest you get Dr. Jones' (leading expert on PBC) book PBC - The Definitive Guide for Patients With Primary Biliary Cholangitis. He devotes a great deal on this subject. The thought is that when the bile flow is obstructed in anyway, for any reason, this causes itching rather than from the PBC process itself. A completely 'normal' liver drains whatever is causing the itch. In PBC, it doesn't, as our livers from this disease are inflamed and have any degree of damage affecting the bile flow.

For some Urso does increase the itching - and for some it helps reduce it. There isn't much that is 'black and white' when you speak of PBC as everyone experiences it differently.

Some never have the itch, others suffer with it terribly. Finding what helps is surely a trial and error method. I will post a list of what some find helpful as well as tips of what 'not to do'. Remember though, everyone is different. Don't anticipate the itch if you don't have it. Again, some never have it. It does come and go for most. There is so much information about this part of the disease. Dr. Jones's book is, by far, the most comprehensive.

I hope this helps a bit. As I've said before, this is one of the most common effects of PBC along with the fatigue. Please read as much as you can about this disease. Good resources are The PBC Foundation, American Liver Foundation, Canadian PBC Society, and any article about it from The Cleveland or Mayo Clinics. Dr. Jone's book is the best and most comprehensive source about PBC overall. Please don't just Google about PBC. All too often the info is outdated and completely wrong.

Ask anything here anytime. We all want to help each other the best we can.

[Samanthaann in reply to DonnaBoll]

Thank you!

[JustChillin68]

This is something I've been wondering too, I have never had itching but since starting urso around 10 days ago I have started feeling itchy especially soles of my feet so I'm thinking it must be due to the urso

[Samanthaann in reply to JustChillin68]

Thanks for replying. Mine has been happening for about three days. It’s wide spread on me could be arms, legs back even my face. It’s so weird. I hope you find relief. Maybe we will learn as others reply. I’m thinking about trying a vitamin E lotion.

[IAmTheGlue]

The itch is under your skin. I have it on and off. I’m in compensated cirrhosis, so I don’t know if this will help you but here is what I do :

Drink water. Like absolutely flood your body with water every day. Do not get dehydrated.

Sarna lotion will help.

Buy a nail brush, like what you would scrub under your fingernails with and scratch with that. It’s effective, but does not damage your skin.

Keep your skin cool, avoid super hot baths/showers.

Sorry you are going through this. 💐

[Samanthaann]

thank you!

[Larrysgirl]

I had REALLY severe itch, before the urso. It's definitely the PBC. I was told it is from the bile buildup under my skin. Heat at night in bed made it worse. The only thing that helped is I now take 12.5 mg of sertraline daily. Hope you find relief.

God Bless,Anni

[Samanthaann in reply to Larrysgirl]

Thank you!

[Larrysgirl]

❤️ Love and Prayers🙏🙏

[JBH2000]

I , too would love to know that answer. From what I have read it is from PBC not meds- but would definitely need a dr to confirm

[zinchunter]

Well I don't know which comes first, but with itch and hives I've been on Fexofenadine, an antihistamine, for many many years. And now suddenly it is the go-to remedy for hay fever!

[Samanthaann in reply to zinchunter]

Thank you

[Sister65]

Itch was what took me to Dr. in the first place. It was utterly intolerable. It completely took over my life. I was prescribed the cholestyremlin (sic) powder which gave quick relief and also helped in diagnosis as the only reason it helps with itch is that it binds with the bile acids and eliminates them. Urso has never caused me any issues. I still get occasional random itching, mainly at night. Really annoying but not near as severe as prior to Urso. Doxepin is really helpfulbut Sertraline is supposed to be the best. Dr Jones addresses this in his book in a very easy to understand manner. Some people have to take the powder AND Urso which has to be timed just right. The itching is about my only noticeable symptoms so I consider myself very lucky. Hope you find relief

[Samanthaann in reply to Sister65]

Thank you!