TERRIBLE ITCHING TRIED ABOUT EVERY FTI... - PBCers Organization

PBCers Organization
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TERRIBLE ITCHING TRIED ABOUT EVERY FTIG AND LOTIONS

genj65
genj65

HI I'm looking for anyone that has PBC and suffering from severe itching like myself all day everyday. I just had a visit with my U of Mic Dr the other day and he is looking into me having some type of procedure where they put IV in for a hour and it removes toxins and it works for some patients for about a month they have no itching. He said my other option would be liver transplant. I don't want a liver just to stop itching. NOTE: My ALK is 336, AST 45 & ALT 60 I was diagnosed in 2016 but with question mark from liver biopsy that it could be auto immune disease. After using steroids and other drugs that pretty much was depleating me far as becoming diabetic, had high bliod pressure, the huge moon face, swollen legs and feet. I was given another liver biopsy Aug 2018 and it tevealed that i definitly had PB so I now take 1200MG of ursodiol daily. I just want this continuing itching to go away if anyone has experienced this and could give feedback it would be appreciated.

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PBCCarol
PBCCarolAdministrator

I was fortunate that my intense itching disappeared (not sure why). I have heard of people having luck with this procedure (plasmaphersis?) .

There is a clinical trial from GSK clinicaltrials.gov/ct2/show...

This study is being conducted to evaluate the efficacy, safety and tolerability of GSK2330672 administration for the treatment of pruritus (itch) in participants with Primary Biliary Cholangitis (PBC). Participants will be treated with either placebo or one of the 4 dose regimens of GSK2330672 (20 milligram [mg], 90 mg or 180 mg taken once daily or 90 mg twice daily). Subjects on GSK2330672 will also receive placebo tablets to maintain blinding. The total duration of a subject’s participation will be up to 45 days of screening and 24 weeks of study including follow up.

You could check to see if you qualify for that here: antidote.me/prescreener/s/p...

I hope others with experience with this procedure comment also

genj65
genj65 in reply to PBCCarol

PBCCarol thank you for your reply i appreciate the information!

When I was diagnosed with PBC over 8 years ago my doctor prescribed Cholestyramine. It's not a statin so it does no additional harm to the liver. What it does is remove the toxins in the blood that are the root cause of the itching. The liver is unable to clean the blood properly which is increasing the cholesterol levels as well. Please talk to your doctor about this.

genj65
genj65 in reply to JaneEyre55

Hi JaneEyre55 i tried the cholestyramine for over a month it did nothing 😑 Thanks so much for taking the time to reply!

Ask your doc about Doxipin

Thanks for the information JeanAZ.

Much appreciated!

CathyPBC
CathyPBCAdministrator

I have had severe itching since 2007 and that's what led to my diagnosis of PBC, and it's never gone away but I can now life with it. I've tried nearly all of the recommended treatments (both medications and self help) and been in 2 clinical trials for possible new treatments, but found that Rifampicin has helped me the most. Rifampicin is not for everyone due to potential side effects but other treatments like cholestyramine and hydroxyzine (Atarax) help a lot of PBC patients. Visit youtu.be/lVaYNJ6Kl2E for the video from our 2018 Conference where Dr. Marlyn Mayo discusses itch and various treatments as well as clinical trials. Good luck, I hope you find relief quickly.

Cathy

CathyPBC thanks for your reply

I'm so anxious to get rid of this itching as on top of me dealing with alot of recent and pass losses it's taking over part of my well being.

Thanks again God bless you.

How is your bilirubin?

VeeWat my bilirubin is 0.56

I tried everything too and itchin went away... it returned now though.

I’m going back to:

Pescatarian, low salt, low additives, no milk, organic diet.

Daily yoga class

Change your sheets every 3 days

Wash your pjs every day

Vinegar or witch hazel splash

Green clay mask

Old prednisone creams

Zinc oxide

Baking soda bath

Peppermint oil

Epsom salt bath

Milk bath

Cut fingernails

Rubbing with a towel after bath

Aveeno colloidal oatmeal bath

Real oatmeal ground up bath

The last 2 with 4 drops of peppermint oil worked the best. The others worked too though.

Thx for all the helpful information much appreciated 🙂

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