PBC and Itch: Hello! If you believe that your... - PBC Foundation

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PBC and Itch



If you believe that your itch is caused by PBC or taking Urso, can you describe, what sort of itch is it? I'm experiencing itching and burning around my neck. I can clearly see red marks on my neck, where it itches. It looks like a release of histamine under the skin. I wonder, if the itch that you experience comes with the red marks or your itch has no "color"?

Thank you!

15 Replies

My itch has no colour. I do sometimes get little bumps which I pick at until the top comes off and a clear liquid seeps through. I find the bumps "hurt" which is why at worry at them until they are gone.

Before medication the itch at night would feel like sharp knives coming together, I described it as a sword fight, this was in my upper arms on the inside. The rest of my arms would have a prickling burning sensation and my face felt as if it were tingling or as if lots of something were crawling across it. Rarely did my feet or legs cause problems.

Now I am prescribed a cocktail of drugs which I hate taking but it gives me some relief however I still "itch". As I sit here typing I can feel the crawling sensation around my lower jaw, the back of my neck is burning then down to my arms and on the anterior surface there is a constant prickling of thousands of hot sharp pointed needles but thankfully the sword fight rarely is present.

I try my best to ignore the so called itch of PBC but I cannot keep doing 24/7 and inevitably I find myself tearing at the skin which is well hydrated, I also use a 2% menthol derma cream as recommended by the specialist.

Hope this is helpful

in reply to butterflyEi

It's tough. Itch is a terrible thing. Thank you for sharing your experience. I hope you get better!

I was diagnosed 3 yrs ago , had severe itching (puritis) found out it was caused by medicine I take for PBC (Ocaliva) had no red marks only from scratching .

It is a mystery of this disease why some itch & some don’t. I’ve not itched the entire time. I itched for the short time I was on Urso but not with OCA.

in reply to mamma261

Thank you so much for you input! I'm glad you are better!

in reply to mamma261

Thank you so much for your input! Hope you are better!

Comes from inside out, it can be unforgiving. The only Western Medicine I tool that worked was Atarax, but atarax put me in such a stupor, my husband had to lead me everywhere.

I heard if you follow Dr Burt Berkson’s protocol, your itching will slowly go way. Dr Burt Berkson wrote books, I think his protocol is in ALPHA LIPOID ACID BREAKTHROUGH or in Honest Medicine.

Some people have rash and some don’t ,

I’m itchy - currently not sure if from disease progression or ocaliva. I use Sarna lotion 2x a day and it helps a lot. Agree with others it comes from the inside out - sometimes bumps sometimes not. Worst in my inside of elbows and knees.

in reply to Ottley3

I have PBC diagnosed after two liver biopsies one in 2016 and another 2018. My itching got at its worse in August a week after my biopsy currently nothing prescribed is helping me stop itching. I started Epson salt baths a week ago it helps a little bit but this itching has given me sores all over my entire body. I meet with my doctor from the University of Michigan tomorrow hoping she has answers. I may try the Sarna lotion although no other kinds for itiching or allergies has worked for me. Any advice appreciated. Thank you!

I have the itch and it is definitely caused by the illness. I was not on medication when mine started and since I have been on it, it has toned it down a bit. I do not get a rash of any kind nor did i ever with this itching. It feels like ants crawling inside of you is the only way i can explain it. I had it so bad at one point that I honestly wanted to die! I still have nights like that every so often. I don't know why it is worse at night though. :(

in reply to donna01

Prayers to you I feel the same way I just get so urritated with the itching and feeling like ants crawling inside. I am up tonight dealing with it. I take the epson salt baths and get some relief. No one can imagine how bad this is I itch more at night too. My feet hands and all over. My doctor said she hopes the ursodiol will help. I'm taking 600mg x2 per day!

Thank you for your input, Donna. I wished you didn't suffer like this! I read in another reply to my question, exact same, the crawling feeling, like you describe. This may not be uncommon for PBC.


Can you have normal alk phos and have the itch?

PBC symptoms have no known correlation to blood bio chemistry.

When I itch it’s mostly just on my arms (I’m lucky). It usually starts with a very warm feeling which then progresses to a prickling. To me it feels like every hair follicle on my arms have an electric current running through them. I don’t get a rash but my skin goes red and sometimes a bit bumpy from the scratching.

The area affected can be quite a small distinct area to a larger area depends on the day. Usually it occurs in the evening just after I go to bed. Mostly lasts an hour or two, again sometimes longer. Although, listening to some people’s experience my itch is relatively mild. But when it strikes its crap and keeps me awake...increasing the tiredness.

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