Itching

[Shezza123]

Hi again I’m so agitated tonight again I’ve covered myself in cream to try stop itch but driving me mental just can’t stop itching and as usual covering myself in cream makes me so cold and numb all over .. I hate this !!!

[janine541]

Aww I so feel for you. I can remember being at breaking point before starting Riferden Nothing helps and you feel at your wits end x

[Shezza123 in reply to janine541]

Thank you , do you take the colestryamine powders too and antihistamine or does the riferden work on its own ? X

[janine541 in reply to Shezza123]

No the Riferden works alone . I've tryed all the powders and the antihistamine they didnt work x

[Shezza123 in reply to janine541]

Thank you that’s good to know I’m going to speak to my doctor about that . Thank you again take care xx

[Hidden in reply to Shezza123]

Hi Shezza123,

I’m the same, nothing worked until they put me on rifampicin. All the sachets, creams and all different tablets ,nothing but tears, scratch marks and bleeding wounds. Ask your consultant to consider it for you. Unless you have been through it you don’t know the mental torture the itch can give. I hope you get some relief soon

[Shezza123 in reply to Hidden]

Thank you for being there and understanding the mental torture side of the itching . X

[YummyBear]

I was originally diagnosed with PBC nearly 5 years ago but after many tests my liver tests showed I didn't have it, although I do have a liver condition, no meds, just monitoring twice-yearly. However, during the years, I did have mild itching occasionally on my body but did not use potions. Chronic itching has now taken over my life on my scalp and neck only for past two months, to include hair loss. My rationale for this is due to taking medications for diabetes, BP, cholesterol, allergic rhinitis (70 tablets a week). Due to Covid restrictions, I haven't seen my gastroenterologist consultant, hopefully I will speak with him next year to discuss relevant tests.

[Shezza123 in reply to YummyBear]

Thank you for replying nice to know someone understands , hope you get sorted out soon . Take care xx

[butterflyEi]

I was diagnosed in 2006, started itching 2014. Slowly the specialist introduced Cholestyramine, did not work completely he then added Naltrexone which did not suit me so I was changed to Rifampicin and then 25mg of Sertraline was added. With this cocktail of drugs I am able to live a relatively itch free life. Unfortunately cholestyramine became unavailable to me and the itching became intolerable so after a little bit of research I added Gabapentin which had previously been prescribed to me for Neuropathy. There is medication that specialists can prescribe for you. Unfortunately many of us wait a long time for the specialists to be able to act, it took me roughly 2 years to reduce the misery of the so called itch of PBC. Anti histamines never worked for me. I hope you find an answer soon.

x

[Shezza123 in reply to butterflyEi]

Thank you so much it helps talking to someone that understands the misery of it all . Take care x

[butterflyEi in reply to Shezza123]

Shezza123 it is great to have a forum like this for sharing and I have been grateful for it on many occasions such a lovely lot of people on here. If you are able to tune into The PBC Foundation on a Tuesday 2p.m. local time there is a specialist giving his time to answer questions. And at 4p.m. most days there is fun time all accessible through their face book page, wonderful sharing. I hate the black hole of not knowing so it's great when we can share

[genj65]

IT'S THE WORSE THING I'VE EXPERIENCED. I TAKE 1 CUP OF CHILDREN'S LIQUID BENADRYL STOPS IT BUT PUTS ME TO SLEEP! I'VE SUFFERED SINCE 2017. I SO THINK IT'S URSO I TAKE 900 MG DAILY. I HAVE TRIED ALL THE MEDICATIONS NONE WORKED. MY LAST RESORT WAS PLASMAPHERESIS AFTER 3 TREATMENTS NO SUCESS. I HAVE BEEN REFERRED TO UNIVERSITY OF MICHIGAN TO CONSIDER BEING PUYVER DONARS WAITING LIST. I SERIOUSLY DON'T WANT A TRANSPLANT BUT WHEN THE ITCHING KICKS IN IF THEY WOULD COME WITH A LIVER I'D TAKE IT!KEEP FIGHTING. LIVE LOVE LAUGH

[Shezza123 in reply to genj65]

It really is horrible I will give that medicine ago . I take urso capsules Daily .. the itching drives me insane on bad days too xx

[genj65]

Praying keep me posted I'll do the same 😌