Itching in hands and feet only - anyone else have this?

[RockPrincess]

Hi folks, I was diagnosed with PBC some years ago now at only 29. I am on urso, my liver seems to be doing really well and I'm generally reasonably healhy except for the itching I have been struggling with for the last 3-4 years. I know those with PBC often suffer "the dreaded itch" but I wondered if people who experience this have it all over their body or only on specific areas?

About 4 years ago I developed a small, dry, itchy patch on the middle of the sole of my right foot. I kept using moisturiser thinking it was just dry but it never really went away. Fast forward 2 years and both my feet were itchy, they often felt as though they were on fire, but only in the middle of the soles and sometimes the heels whilst my toes were still stone cold. The itching was dreadful, scratching in my sleep without realising, breaking the skin and causing bleeding. Doc prescribed various creams - steriods, anti-fungals, various moisturisers without success. The palms of my hands started getting itchy and dry too and since I have had ezcema in the past, I was referred to dermatology. After trying another shed load of creams, I was patched tested as they thought it could be an allergic reation. The only thing that came up was a severe nickel allergy. Hand issue solved as the affected area is only where cutler rests in the middle of my palms but as there are no metals in my shoes this didn't help with the main problem - my feet.

They then decided to give me a course of PUVA for my hands and feet. And yay! After 20 treatments over 10 weeks, avoiding the sunshine and covering up during the best summer Scotland has had for decades and wearing safety specs twice a week for 24 hours....it worked! Clear hands and feet and, although still often very hot, my feet stopped itching. That was in August and the respite only lasted about a month. It's now October and my right foot is back to the worst it has been.My left foot isn't so bad skin-wise but the itch and hot spells are the same in both.

I just moved house so have a new GP. Went to see her this morning and she agreed that the positive effects from the PUVA should have lasted longer. So came away with another steriod cream and a referral back to dermatology. However she has put me on Questra light which I've never had before as she said the itching might not be ezcema but related to my PBC.

Does anyone have any experience like this? Itching in hands and or feet only? Does anyone have any advice on when best to take Questra and if there are any side effects? I just took my first sachet and it wasn't too bad although not the best texture. Doing some quick reading online it says I should take one before and one after breakfast for the best effect although the GP just said one up to 3x daily - no mention of what time of day or how long to wait to take my urso.

If anyone has any advice or even can just tell me that this might be PBC related so I don't feel like I am totally on my own here I would really appreciate it!

Thanks!

[jane1964]

Hello I had itching in my feet and hands from before diagnosis it was really irritating and much worse at night.Occasionaly I get itching all over.Jane

[SunnyXXOO]

Sorry, but Pruritis (itchiness) is a common symptom Liver issues. There are a few things that work to stop itch.

1) Atarax - western medicine and it puts me in serious stupor.

2) Gold Bond itch Spray - Works good.

3) The best for last, RSO Rick Simpson Oil (seed size) and CBD from England, a good CBD Oli will off set notorious THC”.

Good luck

Love, Peace & Ligh

Sunny. XXOO

[butterflyEi]

Hi RockPrincess

I suffer with the so called itch of PBC in specific areas, mostly arms and the left one in particular. Quite some time ago I asked the PBC Foundation about Questran and was guided to one sachet before breakfast and one sachet after. The problem with taking 3 sachets daily if it is spread through the day it will stop the efficacy of other medication that you are taking as the PIL (patient information leaflet) indicates that cholestyramine comes with time restraints.

I take Questran in orange juice, I have recently read that it can be left in the fridge overnight which I have not tried yet but I am hoping the orange juice will swell up the powder more and make it more palatable. I also sometimes mash it into a banana with yoghurt, oats and milk. I do not remember now but I think it takes a bit of a while to get into the system. My main problem with cholestyramine is constipation and I am going to speak to the specialist about Colestipol and/or Cholestagel which are alternatives which I have only just recently heard of.

There is an article in the Bear Facts magazine on the PBC Foundation web site (free to join) Spring 2015 which discusses the itch and various treatments. I think it was written by Prof. Neuburger.

Get back to us and let us know how you get on or if you have any other questions. I was

diagnosed in 2006 itch free until 2014 took me over two years to get full medical help I needed.

best wishes

p.s. I use a 5% menthol cream as a topical application which can bring temporary relief.

[Jlruggie]

Rock,Yes, itchy hands, soles and ankles, shins in the early days of diagnoses 20 years ago. I’m diligent in skincare and follow Ayurvedic principals when I can, take Urso, do yoga. I don’t itch much, maybe a bout of very mild itching every 6 moths or so.

Jlruggie