Itch

[pomice]

I was diagnosed 12 years ago and take 500mg of Ursodiol 3x a day. I experience itching. The middle of the bottom of one foot, on my back, sides of hips etc. Is this the itch from the PBC? Liver enzymes have been normal for years. I also have sweats mostly at night. I am 72.

[anonymousjohndoe]

Hi pomice, if you don't mind me asking, are your experiencing fatigue ?

[vicary]

Hi , I had itching called extreme piritius and believe me it was extreme in the end there wasn't a part of my body that didn't itch , inside my mouth , my ears , I mean everywhere it was excruciating, but my feet where horrendous I wanted to chop them off (I know hard to believe ) I had PBC for over 8 yrs , I had become unresponsive to Eurso ( but tbh it doesn't help itching ) my problem was my Liver no longer dealt with my bile so it went into my blood stream and then crystallized, my skin turned to leather , I damaged it with scratching, lumps , cuts , scabs and bruising everywhere ! the last 2 yrs it totally took over my life , i never slept , I didn't go out and I was in constant pain , I got more autoimmune problems ie sjogrens syndrome, bad defiencys in vitamins etc ( trying my best to keep a long story short ) my bile ducts started to give up , I was put on transplant list, whilst waiting I was fitted with a nasel billiary drain ( Google it ) got to say at the time it saved my life I'd hit rock bottom big time . I had my transplant in Nov 2019 (15 mths later ) and I'm doing really well - no more itch . Do talk to yr consultant about yr itch in my experience it doesn't get better it gets much worse ( sorry ) can I ask do you live in England ? x

[butterflyEi]

Hi, I also am an itcher. Diagnosed in 2006 I did not start itching until 2014.

The medical bods worked through a process of elimination with medication. First Cetirizine 2 tablets twice a day. When that didn't work I was prescribed Colestyramine, Naltrexone was added and removed as it made me aggressive, Rifampicin was then prescribed at 150mg twice a day, that did not do it so it was upped to 300mg twice a day. That gave me some peace but not completely free of the itch so 25mg Sertraline has been added and I can up it to 50 mg if I need to. Currently my medication is Rifampacin, Sertraline which is not holding the itch. Due to the virus outbreak I have been unable to get the Cholestagel I was taking which I found less hard on my tummy so I havenow just managed to get a box of Colestyramine to add back into the mixture and hope that I go back to an itch free body. I use 2% menthol cream straight from the fridge and sometimes I have to ice my skin just to give it something else to think about.

I have found a chill pillow useful for the sweaty heads at night. Whether this is PBC related I do not know, I am 68 so long past menopause. The itch is certainly recognised as one of the debilitating symptoms of PBC. "They" say drinking lots of water helps but all that does for me is keep me in and out of the bathroom through the night.

hope this helpful

[SimbaTutor]

I'm sorry you are struggling so with the itching. I take 500 mg urso twice a day. I also take sertraline and cetirizine each night along with a multivitamin. In my case, dehydration makes itching worse., so I try to stay hydrated. I have found the original Sarna lotion with menthol to help some. I also use natural products from Puracy for hair care, skin care, and laundry to minimize the chemical load on my liver. They also seem to help with the itching. I use the cool pillow along with a ceiling fan and still alternate between covers/no covers thru the night. I seem to do better on a diet with minimal processed foods as well. In my case, I have used a trial and error approach in the past 6 years since my PBC diagnosis. Blessings to you as you seek solutions.

[babywolf]

Hi Pomice, I wish I had some words of wisdom and some wonderful answers, but all I can tell you is what I have experienced. I am 59 years old and was diagnosed with PBC in 2017. I also am on 500 mg of ursodiol, three times a day.

There have been periods of time where my liver enzymes have been elevated at certain times despite the medication. I suffer from extreme fatigue and itching. The fatigue is constant and debiliating. The itching seems to go it stages. It is the bottom of my feet (I hate having my feet touched) but I sswear could itch them raw. I also have on my upper chest, back and arms, and under my arms. I live in AZ where is normal for it to be 110 and above in the summer, but my arms are so scarred and have sores from scratching I try and cover them up as much as possible.

Unfortunately now it is pretty active. I have tried home remedies, otc medications, medications prescribed by my doctor. Nothing has worked. Alot of the medication caused problems with the two medications I take for epilepsy and side effects caused more problems.

The only thing that has brought any relief is I try and stay away from any processed foods. I have celiac disease so am very careful about what I eat. I also have terrible problems with my eyes from Sjorgens Syndrome. I also take showers instead of baths, and warm water instead of hot.

So sorry I could not be more helpful. I hope you are able to find something that works for you.

Stay strong.

[genj65]

I am suffering with itching too. I take URSO 900mg 1 time per day.

I suffer terribly with itching my itch is everywhere and the feet are the worst especially at night time. I was in ER last Thursday tested for covid but diagnosed with strep throat and prescribed steroids and antibiotics making me terribly ill 🤒

Long story short my last resort they tried for my itching waa 3 sessions of plasmaraphiasis did nothing so I've been asked to cinsider being placed on donors list

I had someone on this forum that told me months ago to try using "Head and shoulders shampoo" for showerimg followed by drinking a cup of hot lemon water at night. I've tried and feel less itchier using the shampoo all over my body I got relief for a couple of days but now sick with strep throat so put on a antibiotic that seems to be making me itchy.

Hope you find relieve this itching is terrible and like other stated abive the feet itch omg 😲

[vicary in reply to genj65]

please read my reply to pomice higher up , hope it helps and if you need any more info please don't hesitate to ask .

Totally know where yr coming from that itch beat me into the ground .

wishing you well , stay safe x