Itching: I am a male and have had PCB for... - PBC Foundation

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Itching

Piot
Piot

I am a male and have had PCB for about 15 years. I have just started to get the itching symptom which is really really irritating - is there a medication or treatment to help control/cope with this?

8 Replies

There is a nasty powder that you can take. I don't remember the name of it. Sorry. But I itched really bad and took it only when I couldn't handle it anymore. My doctor told me it was the only thing that would ever help the itch. However I quit eating gluten to help my child (so she didn't feel alone in the process). I do not itch anymore. My doctor swore that it wouldn't help. But that's all I did and I haven't been itchy unless I eat something with gluten. You might try it. Good luck. I know it can be miserable.

I don't have this symptom but many people on this forum talk about Questran( Colestryamine) as being effective. Also dermacool 2% menthol aqueous cream for temporary relief. I hope this helps. Take care.

I forgot to say , you should contact the PBC Foundation for advice. They are fantastic.

After sever meds that didn't work.... I'm taking 50mg zoloft. I also cut out all sugar most carbs. Hope you find relief soon :)

I am an eighty-two year old male diagnosed with stage 3 PBC two years ago, and I also have pruritis (itching); I take hydroxyzine three times daily, and sometimes it seems to help and sometimes not. I can just say that it is my most noticeable symptom. Apparently it goes with the turf. Do spread the word if you find a better response. All the best.

I started itching in 2014 (diagnosed 2006) it was not until 2017 that the balance of medication was finally sorted. The GP could only prescribe Cetirizine two tablets twice a day but this barely helped. After a referral to a specialist various medications were trialled.

First line defence is Cholestyramine (Questran and Questran light) which comes in a powdered form to be made up with water or milk. However I could never manage to get it down me with this medium but ended up with taking it in porridge or with kefir. A thicker liquid seems to help. This medication if you are prescribed it should not be taken near to the timing of other medications. As Cholestyramine only took a bit of the edge off the itch the hepatologist added Naltrexone but it made me very aggressive, this was substituted with Rifampicin which is a life saver for me and many others. Still itching the hepatologist added 25 mg (I can increase to 50mg if needed) of Sertraline. Unfortunately at the beginning of last year I was unable to source the Cholestryramine or Cholestagel (which is an alternative to cholestyramine) and have ended up taking Gabapentin. For me a cocktail is the only way to suppress the itch. I would add that finding yourself to be itching one of the main recognised symptoms of PBC is not an indication of disease progression (all these words I have learned from those far better educated in PBC than myself) but it is something you best talk over with your specialist hepatologist. Truth be told (if you are in the UK) I would not bother with the GP they are not liscensed to prescribe these types of medicine although they can prescribe the 2% menthol dermacream which was mentioned by Tcmb50

Hope you get it sorted.

Piot
Piot in reply to butterflyEi

Thank you Ei and everyone else who has taken the time to contribute their experiences and suggestions - I truly appreciate it

I have been on Cholestyramine for several years now and my itching has disappeared. It's a pain since you have to take it a few hours away from others meds though so I set up reminders in my phone (since I do get busy these days). Another thing, talk to your Hepatologist and Pharmacologist about all the meds.

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