No relief ever !

[vicary]

My itching rules my life , so down and fed up - nothing helps - to add salt to the wounds I now have severe athletes foot and toe nail infection and nothing over the counter works , so saw my GP who said I need a 6mth course of oral tablets but need to see if my LFTs are ok first and another 2 wks before I do my next blood tests ! Not sure I can cope much more my body is such a mess with itching everywhere - it reduces me to tears all the time no quality if life anymore 😢

[Hidden]

I'm vary sorry that you have to go through this. Many people with itching are claiming that gluten free and sugar free helps. For me stay cold help. If I get in the heat it feels like I'm being poked with pins. Exercise also causes itchy skin for me. I also drink a lot of water. Itching to the extent that many many of you have has not started to affect me yet. I'm just making suggestions that I have heard from others. Like fried foods. I'm here if you want to talk in pm or in your chat. What stage are you in and how long have you had Pbc. I have Pbc and aih. I'm newly diagnosed since January and I'm in USA

[vicary in reply to Hidden]

Hi jennyhadenough , thankyou for the reply , I like you stay as cool as I can , I use a fan at night it helps a little , but like you most of the time it's like red hot needles are stabbing me , I can cope with all the other stuff even the severe fatigue but the itching beats me and reduces me to tears many times , my body is so sore and bruised and scabs everywhere , I try everything that's suggested on here and only eat healthy some things help for short periods but on the whole nothing stops it , I was diagnosed over 5 yrs ago but have had it longer due to being misdiagnosed to start with it gives off a high cholesterol reading and I was just treated for that for a couple of yrs till a new GP questioned my blood tests , I didn't itch for the first couple of yrs and most people wish to win the lottery well my wish is for this itching to stop would rather have that than millions of pounds , oh yeah I'm from the UK so it's dollers for you. Think we need to live in Iceland !!

Always here too if you want to talk and most of the time in pretty positive just a bad patch at the moment .

Take care and keep well .

[Brummi]

Hi, whilst working at sea I picked up a set of bath towels, I put them away as I found them to rough. I suffer the itch, out come these towels and I found them ideal to rub itchy places with. They don't stop the itch but I don't have scratch marks on me now. lol

[Hidden in reply to Brummi]

How are you Brumi?

I don't quite understand why someone can have a liver transplant and still have to suffer the symptoms. I get it that it's autoimmune. But there has to be something to relieve this itchy skin.

[Brummi]

I am fine thank you My autoimmune disease started with my pancreas something called. ig4G. Yep that does exist, it then spread to my liver. This is not curable but controlled , as you say heat causes itching I have not thought about my diet. No matter what I eat I cannot put weight on, I have to try to balance things as I have diabetes. Apart from that I feel good I hope you feel good as well.

[fred6577]

Sorry to hear you are suffering with this itch. I itch only sporadically and can imagine it's awful full time.

I thought I had severe athletes foot, fungal toe nails etc. Nothing over counter worked. After my PBC diagnosis I read somewhere about psoriasis. Asked GP but she said no, it was fungal. I said I had been treating it as fungal for years (it did improve in warm weather). She took toenail samples and prescribed cream. It got worse, more sore and itchy. When I went back for test results there was no fungal infection and although GP would not confirm psoriasis, she did prescribe a moisturiser for it! It is now under control 🙂 It used to keep me awake with really bad itching, but just on my feet. My GP did say that the tablets for a fungal problem had were not good news to the liver. If you haven't had fungal confirmed by a test I think you should ask for one, just to make sure you actually need the pills.

[butterflyEi]

Hi vicary

I am an itcher and totally empathise with your post. Currently I am medicated with colestyramine and rifampicin but the itching is still breaking through in the guise of millions of hot pins under the skin. I do find though that temporary relief (and truly I mean temporary) is given by using a 2% menthol cream. Not sure which country you are in but in the UK I have found Arjun cream and Dermacool cream.

An old fashioned method to clear up fungal infections was to use potassium permanganate which is a mild antiseptic and astringent but I do not know if it would be contra indicated for use by PBC patients but I would think something topical rather than tablets would do less harm to the liver. I am sure you will be aware that to survive the fungus needs a damp environment so you need to change your shoes often and keep your feet dry. I think I remember a post where you have to work in enclosed shoes - do you get breaks during the day - if yes include a bathroom break where you can wash and dry your feet on a towel that belongs to you. Sharing towels can pass on the fungus. A change of enclosed shoes would help the other pair dry out. When you are not working a sandal or flip flops would help to keep the feet dry. Do not share towels with others. To break the cycle of the fungus you will need to make a weak bleach solution and clean the insides of your shoes and clean the shower tray regularly. In the past I have used Milton sterilizing solution rather than bleach. Taking this action is a lot of extra work but it may help with the athlete's foot however the fungus under the nail may be more difficult to resolve. One trick an elderly person I knew used was to wash their feet with a long handled brush because they found bending difficult and then blow dry their feet with a hairdryer - it was a great way to keep feet dry.

I hope this is of some help

best wishes

[vicary in reply to butterflyEi]

Hi butterflyEi , thankyou for yr reply and advice , I def have athletes foot and toe nail fungi got the results back to confirm and my GP won't prescribe the tablets without my LFT results from my consultant , I work in a pharmacy so have tried all topical treatments and my boss said the same as my GP when it's so severe topical won't work and my GP says as long as my liver is stable the meds will be fine thats why checking LFTS , i do all the things you have advised always take my flipflops and wear at break times and wash my feet and have the cooling cream but only the 1% so gonna request the 2% keeo buying new shoes too but didn't know about the Milton so will try that too , my feet and body always itch with the PIC but my feet are horrendous now with the athletes foot my body is just covered in scabs , My partner bout me a large fan it's the only way I can get off to sleep but have to turn it off as I wake up freezing so does my partner and then Im back to scratching again can't win ! Feels like I'm being stabbed with needles .

[Pamela4475]

It's my heartburn... constant and achy all over in joints

[vicary in reply to Pamela4475]

Sounds like you have acid reflux ! , when my consultant did the biopsy of my liver he said I had acid reflux ( This is when the acid comes up from yr stomach into yr chest ) I had suffered with heartburn for yrs and I was put on Lansoprazole never get it now unless I forget to take them for a couple of days ! I also have a calcium and bit D defiency that caused my muscles and joints to ache and was prescribed ADCAL bit D and calcium combined and they help a lot, do you have high cholesterol ? if yes wot statins do you take as simvastatin cause aching muscles and joints . But I would def advise you see the doc about yr heartburn I know how bad it is .

[dianekjs in reply to vicary]

The lansoprazole is a PPI (proton pump inhibitor) and can cause calcium, vitamin D, B12, magnesium, and other deficiencies as it interferes with absorption. It's good you are supplementing while on a PPI. How would a liver biopsy give information about reflux? Reflux can be diagnosed with an EGD, manometry, or other diagnostic tests of the upper GI. I have reflux also, secondary to a connective tissue disease. I have to take a PPI to control it, but wish that I didn't because of the long-term side effects.

[Pamela4475 in reply to dianekjs]

Diane I have had an egd but having another soon. I think after long term use po just need to be changed... I also need to avoid spicy but find that so hard to do

[susanburgess]

Get cetirizine from the doctor lamisil once for nail infection and mycil powder for athletic foot hope this helps regards