Pbc

[janine541]

Hi everyone

Hope you are all well. My itch is fantastic at the moment I have been on Rifapancin since February.

I went to see my consultant Wednesday and we talked about it being an antibiotic and how it's not great to stay on this for eternity.

How long have people been on this Rifapancin as I'm worried if I come off in a year or two that the itch will be back and I'm running out of treatments for the itch.

Has anyone gone to a transplant for the itch as he talked about this too.

Thanks janine x

[butterflyEi]

I have been taking Rifampicin since 2016. My specialist never talked of a transplant. There are some itch meds in research which they hope will be coming soon, one is Seledalpar (or similar spelling) which was held up due Covid. Unless there is a good alternative I would not want to be denied Rifampicin.Maybe a chat with the foundation would be helpful.

[janine541 in reply to butterflyEi]

Hi I know the feeling . I'm on Rifapancin twice a day and it's been the only relief in a few years.I will talk to them see if they can offer advise thankyou

[Bosco54]

Somewhat off this particular subject but let me throw this out there. I have PBC and am on Ursodiol and for the last few years I have had progressively worse itching that has actually disturbed my sleep. I went to an allergist just to make sure that my itching was not due to an allergy. No allergies but he discovered my Vitamin D level was very low which unbeknownst to me can cause itching. I've taken a large weekly dose of D and the itching has been reduced by probably 90%. Something to consider. I always thought Florida sunshine was enough but he discounts that as a main factor in D levels as compared to diet.

[Onesmallstep1969 in reply to Bosco54]

Me too. I take Vitamin D and it has helped. There also are new medicines being studied and I try to stay on top of these.

[Lj28]

Pbc can cause low vitamin d

[ninjagirlwebb in reply to Lj28]

Yes...this is why my hep tests that in my blood labs. I take a supplement.