itching with pbc

[Shezza123]

I have been on urso now for good few years now and overall I’m ok but last three days my symptoms of itching have come back so bad I could cry ,I’m so bruised , I literally itching from head to toe and feel so alone . Just feel like something crawling over me all time . 😢😢😢

[mel16]

hi Shezza

I also get this crawling feeling more so at night. So much so , I was convinced I had bed bugs. Also sometimes you get a sharp pin prick like feeling. It is so weird. I am going to mention it to my consultant. Do you ever ask a question to the pbc foundation who host regular Q abd As with top hepatologists in a webinar on you tube. They give very good advice.

[Shezza123 in reply to mel16]

No I never tried that , thank you any advice is welcome .

[butterflyEi]

Diagnosed 2006/7 I started itching around 2014/5. I was eventually able to see a hepatologist who started me on Colestyramine. Unfortunately this did not work for me but after some trial and error I settled on Rifampicin and Sertraline these two medication were magic. I tried all the other suggestion of keeping my skin well hydrated and moisturised, a cool flannel in the fridge, anti histamines etc. These suggestions helped a bit but did not address the deep underlying so called itch which drove me to distraction.

A telephone call, email or WhatsApp with the PBC Foundation's helpline may be useful if you are unable to easily access help from a hepatologist/gastroenterologist.

I hope you find a solution soon.

[Shezza123 in reply to butterflyEi]

Hi thank you for reply I tried colestyramine sachets and didn’t help at all , also tried keeping skin moist but that seems to make me cool and then feel cold sensation I don’t like . I’ve just made an appointment to see doctor but as usual 2 week waiting list , so gonna monitor it over 2 weeks write down each day how feeling .

[DonnaBoll Administrator in reply to Shezza123]

So many of us, myself included, know exactly how you feel with this itching. It can seem to consume you.... getting any kind of relief if welcomed, I know. I will post a list of things that I have accumulated over time from other members. It's often a trial and error for each individual. For me, never using any scented soaps helped. I always used Baby Magic soap or Dove.

[DonnaBoll Administrator in reply to Shezza123]

Keeping track of your activity and/or foods on the worse days is a great idea! also what you are wearing or did you take a really hot shower that day

[DonnaBoll Administrator]

Regarding itching….

DO’S

Tepid showers

Dove or baby soap/shower gels

Exfoliating gloves using quick, easy strokes

Coconut oil in the shower – and afterwards

Meds – Sertraline, Benadryl, Hydroxyzine, Questran packets, rifampin, cholestriramine, cholesterol lowering drugs (fenifibrate & simvastatin)

Cotton or soft jersey material clothing – layering

Alcohol soaked cloth frozen in Ziploc for scratching

Peppermint oil in Aveeno lotion

Sarna or Calendula (online) lotion

Cold showers

Gold Bond diabetic lotion

Oatmeal based lotions or oatmeal baths

Ice, baby powder to the area

Bags of frozen vegetables to the areas– or make your own with mixture of water/alcohol

Put long socks on your hands – especially at night (member grandson’s suggestion)

100% aloe gel

Triamcinolone ointment or cream

CeraVe lotion ( sold almost everywhere)

some DONT"s

chlorine in a pool can make it worse'

avoid being in the direct sun for long periods as sweating can increase the itching

nylon or tight fitting clothing

NO really hot showers

[sophiaS1980 in reply to DonnaBoll]

Hot showers, really help me, a lady in my doc's office told me she does this, and bingo, it helps me too.

[DonnaBoll Administrator in reply to sophiaS1980]

we're all different for sure... if it helps then do it! for most it causes sweating - that causes itching. This is why it's so important to all share our experiences.

[Shezza123 in reply to DonnaBoll]

Thank you for all your ideas and advice I could start maki g notes of what ate etc on days so can try work out what causing it .

[janetfolley]

Hi Shezza.. I'm from the UK and was diagnosed with Pbc in 2004.. with my itches I find that Sudocrem helps alot. But as our NHS is in crisis I've been waiting to see my consultant since February keep getting told your on the waiting list. I've also found that chocolate causes my itches sadly as I love chocolate I had to give it up.. It's just a matter of limitations.

[Shezza123 in reply to janetfolley]

Sorry your suffering too , thanks for your advice I’m going to start monitoring it everyday see if can find trigger .

[DonnaBoll Administrator in reply to janetfolley]

How awful that you have to wait so long to see a hepatologist -- and still wait. Write down all of your questions as you think of them. Don't you hate it when something you really like is something you shouldn't eat?!