Pbc: Hi is anybody on Riferden for the itch - PBC Foundation

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janine541
janine541

Hi is anybody on Riferden for the itch

10 Replies
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Hi Janine,

Not heard of that one, I am on rifampicin for my itch. I’m sure someone will be able to help though 😁

janine541
janine541 in reply to Angel46

Hi thankyou for coming back to me.

If you look on the box that is the other word for it.

Has helped you. My consultant says it can have side effects and liver damage but with most people its Good

Janine

Angel46
Angel46 in reply to janine541

It has worked great for me, they took me off it once when lfts sky rocketed but that was caused by something else and I got back on . Been taking them for years x

Over here it is called Rifcap (Rifampicin) which is an easier name to remember, for me. I have been taking this for about 3 years now. When I first started it I noticed an impact on the itch straight away. Unfortunately my itch is quite resistant and I take other medication with the Rif to help keep me comfortable. :-)

Thankyou

Hi, it worked a treat for me!

When I started taking Ocaliva the itch was unbearable to the point where I could only take 5mg 3 or 4 times a week. Within 2 weeks of adding the Riferden I was able to take the 5mg daily with only minor discomfort.

I tolerated the Rif well and my specialist and I considered the risk to be outweighed by the benefit of the Oka. The red/orange pee was a bit of a surprise, but overall it was a great experience.

As with everything else your specialist will weigh the risks/benefits for you.

janine541
janine541 in reply to kat750

Thankyou

Rimeru
Rimeru in reply to kat750

Red/orange pee? is that a daily thing? Sounds concerning

janine541
janine541 in reply to Rimeru

It's the medication. Nothing to worry about

janine541
janine541 in reply to kat750

Please can I ask my bloods are on the up with starting Riferden.

My Alp had gone down to normal range 2 week ago and now its up at 204.

Having more bloods today.

Did your ALP rise

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