Pbc

[judysutherland]

I have pbc and suffering with terrible itching, has anyone come across treatment there reduces this symptoms. It would good to her from you.

[Auds5]

Hi judysutherland

I too suffered from the dreadful itching and tried many things to combat it. For me the only thing that worked was when my Consultant prescribed Rifampicin.

Worth mentioning it to your GP or Consultant and see what they recommend for you. Don't suffer in silence.

Take care.

[Optiplex990 in reply to Auds5]

I have had dreadful itching round ankles in particular. Also swelling in both ankles which goes away overnight if I ly with my feet and legs elevated at night.

The taming of the itch for me is to apply a cream called CETRABEN.

It is available on the NHS prescription but you probably could buy it online..

Hopefully this helps.

[cazer in reply to Optiplex990]

hi,.. im no medical person.. but from my own experience and what ive read this does not sound like a typical pbc itch...

pbc itch tends to be all over the place.. and extremities.

the fact it goes when you ellivate.. sounds a bit like fluid collecting on your ankles and then clearing again....

i think you should get this swelling check out... it may be completely unrelated to the pbc... and hopefully treatable...

hope it improves.

best cazer

[Philippastcarin in reply to cazer]

I did and after every remedy known to man all failed, my Dr said try citirizine, an over the counter hey fever remedy,

I take one a day if it starts I take another.

Works to a level where I can easily ignore what’s left.

Good luck. It is at times the most frustrating part of PBC

[cazer in reply to Philippastcarin]

oh good... if you have a treatment, that's good... usually antihistamines don't work on pbc itch.. but its whatever helps isn't it...

my itch has reduced significantly after transplant last year... but yes it is unbearable when at its worse isn't it...

i had it for 19 years before transplant... and i didn't have a signal nights sleep without being driven mad by the itch... agh...

still don't get great sleep but i think after so long with the itch my its ingrained to be awake in the night.

best wishes to you... hope your symptoms stay controllable. cazer

[Optiplex990 in reply to cazer]

Hi Cazer

I was itching all over. I also have varacies which means I have to take beatablockers to reduce the heart pressure which means the fluid is not being pumped out causing fluid to gather. Hi On top of this I fell and had to have a hip replacement which caused me to have a clot in my leg a few weeks later. This necessitated taking tablets to dissolve the clot.

In all of this the consultant suggested the nutrients or possibly the protein was leaking into the layers of skin causing the itch. At that time there was also very blotchy skin on my upper body also made me itch.

Not being a doctor myself I am not sure if it’s the Urso or the fluid that causes the itch. But centraben cream does soothe it.

Pick out what works for you and hopefully you get relief.

[butterflyEi]

Hi, after a process of elimination by the GP of various anti histamines including cetirizine as mentioned by another contributor I asked to be referred to the hepatologist. He started me with cholestyramine (Questran) and when that did not work he added Naltrexone which did not suit me at all that changed to Rifampicin (Rifadin) and I began to have some peace but the itch was still there. Some time later 25mg of Sertraline was added with an allowance to go up to 50mg if the itch was active again. This seems to be the last line of defence so I am not sure what else can be offered after this when the itch continues other than transplant. As a topical application I use 5% menthol cream which brings temporary relief as does ice directly on the skin. This process took about 2 years to get me to the stage I am now.

The PBC Foundation's Bear Facts magazine has an article on itching in their Spring 2015 edition which you may find interesting. If not already a member the PBC Foundation is free to join.

best wishes

[judysutherland in reply to butterflyEi]

Thank you for your response. I have resented commenced Rifadin and it has slightly improved but at night it is a nightmare. I will try and get access to the article you suggested. Thanks again.

[alig60]

Hi my wife has been diagnosed with PBC pain in her right side and itching all over. The last ten 10 days she's been on:

1. half squeezed lemon with warm water 30 mins before your breakfast.

2. Porridge with her supps consisting of dandelion root, milk thistle and curcumin.

3. 2 pumps of cbd canny family UK the water base one.

4. Drinking 2.5 litres of high alkaline water through a machine I bought.

5. 2 smoothie a day consisting of

Half organic cucumber

3 celery sticks

Hand full of blue berries

1 beetroot

1 lemon squeezed

1 tea spoon of organic wheat grass

1 tea spoon of organic papaya seeds.

1 cup full of spinach

1 half cup of kale

2 organic Carrotts

Plus her 2 meals a day fresh grilled chicken Carrotts broccoli and sprouts

Before bed 2 pumps of cbd with high alkaline water.

Her itching has stopped completely hope this helps

[judysutherland in reply to alig60]

Thank you for your response. What machine did you purchase for the alkaline water please . Where did you get the idea to use all these ingredients from. Was it advise you were given?

[alig60]

I bought the OXA SMART jug and filters for now and getting a ph level of 9 all the other ingredients was down to over 50 hrs of research including videos on you tube for cirrhosis and the truth about cancer documentary really helped about all different foods. Forgot to mention half an avocado as well in the smoothie.

[evesmith1963]

Hi,

My Dr put me on rifampin 2x day. Although I still itch it's so much more bearable. Hope you find some relief soon.

[judysutherland in reply to evesmith1963]

Hiya I am on rifampin 150mgs twice daily but I am still kept awake with the itching but I think that is because I am have hot flushes also.

[Arlie]

WhrnnI use to get very itchy I filled the tub and added apple cider vinegar, soaked in it , I added a couple of cups to the tub

[judysutherland]

thank you I will try this