PBC itch

[Kearny]

I’m told it’s Pruritis that goes with PBC and that the nerves are firing at the bottom layer of skin. No amount of scratching will control it. However, many of us suffer from the rash in high areas of perspiration. Your doctor should be able to prescribe for both disorders. I have 3 prescriptions for Pruritis and I was allergic to the prescription for the other, which acts like topical yeast.

[vicary]

Unfortunately for me nothing worked ... my piritius became extreme ... my bile was going into my blood stream & crystallized due to the deterioration of my bile ducts & this couldn't be reversed ... my quality of life became zero ... I couldn't sleep , eat wear normal clothes or function properly but to name a few ... my skin turned to leather & the itch dominated my whole life to the point I could no longer work or anything ... I was diagnosed over 12 yrs ago & I started with piritius 5 yrs in but it I managed it for the 1st couple of yrs but once my bile ducts started to deteriorate & it became extreme the next few yrs where torture ... I was black & blue from scratching ... my body was covered in lumps .. sores & scabs .. my toes & finger nails became infected ... mouth ulcers & cold sores the list goes on ! I was put on the transplant list there was nothing else they could do things would only get worse ... my liver was no longer performing all its jobs ... it was hell on earth ... my mental state was suffering big time & waiting for my liver to start failing wasn't an option to put me on the list so I was put on due to no quality of life & fitted with a Nasel Billiary drain to help extract the bile from my blood stream whilst I waited ... this is a short term fix but the relief it gave me although it be fir a short time I know saved my life ... I didn't want to die but I didn't want to be here either ... I was in so much pain I just wanted to sleep & not wake up if you can understand that! I got my transplant in Nov 2019 & although its been a rocky road & I still have good & bad days ... I haven't itched since the day of my transplant ... I feel more human than I have in years ... I am back at work & slowly but surely I am getting there .

So to all of you out there that suffer with piritius, I sympathise with all my heart ... I totally get it !!! There are different answers for us all but I will say never just put up with it & although our GPS are marvellous tbh only the liver experts really get it PBC is complex leads to many more autoimmune diseases ... so always be heard . Take care & stay safe my fellow warriors ❤

[butterflyEi]

The only thing I found to control the so called itch of PBC has been the concoction of medication prescribed by the specialist. Rifampicin Sertraline and Cholestyramine (cholestyramine has recently been replaced by Gabapentin). Other conditions can then be sorted out by the GP. As Prof. Jones has said in his interactive presentations hosted by the PBC Foundation the aim is to get us to live the best life we can.😊

[coronavirus19]

Im really sorry to hear of your suffering i was diagnosed in 2009 with high ALP and GGT im on urso and has helped but last year i started to get the itch on arms face but not too bad the last 6 months i have a aching on both feet it started just on the top but no redness but now its a ugly red rash that goes from my big toes down to the side of my feet with very defined edges my gp by phone has prescribed various creams for dermatitis then ecxema one a steroid none worked is worse at night i find some times bathing feet in cold water with bicarbonate soda soothes it then i put on germolene but nothing is clearing it up my gp has referred me to see a dermatologist which was 4 weeks ago still not heard anything i have rang and left message but no reply so far its driving me crazy i am now retired so at least don't have to work and try to sleep when i can, i cannot find any answers on google that mention rash with defined edges? does anyone else know or have similar.