Bezafibrate : I have been on Urso for about... - PBC Foundation

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Bezafibrate

Melwoods profile image
8 Replies

I have been on Urso for about 6 months but my levels have been up and down.

I started on bezafibrate about 4 weeks ago and my ALP has gone from 686 to 377 !

Is anyone else on this , I still have the terrible itch x

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Melwoods
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8 Replies
butterflyEi profile image
butterflyEi

Hi Melwoods

Sorry to read that the "itch" is still present. I know with my medication it took a while for it to get into the system. I have Questran light and rifampicin. Yep!still itching but not so bad now. Some of the problem is the drugs they try us with are not originally designed for the itch so the patient information leaflet or Google cannot give us more info.

Do you use a 2per cent menthol cream? I have found this seems to confuse the itch. Ice blocks also work but both are only a temporary solution.

Sorry I cannot be of more help I know so well how low the itch brings us.

Best wishes

Melwoods profile image
Melwoods in reply tobutterflyEi

Hi thanks for the message.

I have irritractable itch and have tried questran, rifampicin, sertaline and naltrexone.

I'm hoping bezafibrate will eventually work as it drives me crazy !

I have ice packs strapped to me most days and have tried every lotion in the book, I just use coconut oil to keep my skin hydrated but it has gone really thin due to scratching.

The itch is a horrid thing 😢

I'm glad you get some relief

Thank you.

Hi Melwoods. How is your itch now? I have been on bezafibrate for three weeks now and feel amazingly clear in my head and energetic. Did you have any fatigue improvements with the bezafibrate? I am cautious still to be happy to soon as I just had a lung infection. My bloods will be taken again in December so curious because a non responder to Urso for four years now. Curious how the bezafibrate works for you now after six months!

Melwoods profile image
Melwoods in reply to

Hi it's not work

Glad to hear it has for you x

I still have irretractable itch !

Currently having photo light therapy 3x- a week but it's making it worse.. I'm still waiting for a clinical trial as I haven't slept properly for the past 17 months now and the itch impacts on my life

I am so sorry to hear you are still itching so terribly this despite your liver values dropping? I keep my fingers crossed you can get into that trial!!!

Melwoods profile image
Melwoods in reply to

No they aren't .. Alp around 500 alt around 150. They want to try and sort the itching out before they treat the disease

So sorry to hear I hope it gets better for you soon!

Melwoods profile image
Melwoods in reply to

Thanks

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