Itching: I haven't been on this site for some... - PBC Foundation

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Itching

Pat_H profile image
8 Replies

I haven't been on this site for some time, so please forgive me if you've heard this all before.

I was diagnosed in 2011 as having PBC, but I was itching constantly from about 2008. I was put on Ursofalk, which relieved a little, but not much, of the itching. I was happily taking my Ursofalk until 2017, when my Consultant told me I was virtually a non-responder and that he was going to try me on Bezafibrate as well as Ursofalk. The Bezafibrate I take is called Bezalip. I take three pills a day with meals.

From the day I began taking it - no more itching, except the itching that anyone would expect - say a hair falling across the face. It's been fantastic.

Apparently originally Bezafibrate was a drug given to people who had high cholesterol, but it had the unfortunate side-effect of bring their ALP numbers down - not good if your ALP number is normal. However, in my case, where my ALP number before Ursofalk was just below 900, and all the time I was on just Ursofalk hovered just below 400, it was fantastic when, after three months of Bezafibrate plus Ursofalk, my ALP number was 134. Now it is down to 114. Normal is below 130!

I don't know whether it's just that I am lucky, or whether Bezafibrate has worked for anyone else? I should love to know.

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Pat_H
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8 Replies

Thank you for this post. It is great news. It must have been like a miracle for you. I am pleased for you and it's encouraging for myself and others. At present, and after 8 years, I am still a thankful responder to Urso. I'm raising a glass (of unsweetened almond milk) to URSO and BEZALIP and to us all!

Gioielli profile image
Gioielli

Hi Pat, after a year on Ocalvia which made no difference at all to my ALP level - hovering around 200 for about 4 years now - I have just been put on Bezafibrate to see if that will help. Will keep you updated.

Candy12 profile image
Candy12

Thank you Pat, a positive response to fibrate which iam happy to read about. ,so pleased it worked for you. Hope it does for me.

I ve not taken the fibrate Yet... But like you I was diagnosed in 2009 put on URSO with everything ticking along nicely as being stable. Until last summer when my numbers started to climb, it’s now thought that after 10 years that I no longer respond fully, or maybe I never did, my ALP was only 268 at diagnosis. It went down to the lowest of 170, but always being under 200 it was felt I was doing okay,

I’ve been having 3 monthly bloods now to monitor the situation so I’am just waiting for the results of a third blood test and an MRI scan next month. When those results are back if there is still an upward trend I have a discussion of whether to start a fibrate, or the new OCA.

My doctor mentioned the fibrate so I’ve been leaning towards taking it, although when I mentioned the new drug OCA she did say she was happy to prescribe if that’s what I prefer but I’am on the fence with that one, just not sure . After all this time I’ve just started to itch so anything that will help that, would be beneficial.

butterflyEi profile image
butterflyEi

Good news and pleased to read your post. As an "itcher" I am very interested to learn about bezafibrate but my ALP numbers are good so I am not sure the specialist would recommend it for me. I have only just seen him so I may write and ask. Thank you for your post.

Balloch58 profile image
Balloch58

I am very lucky as I don't get any itching.

Ktltel profile image
Ktltel

So happy for you. That is wonderful news.! I just stopped Ocaliva for 30 days because my Alk-Phos was climbing on it. I'll be tested again May 14th. I've been on URSO since Jan. 2017. All my numbers are in range except for my ALK. What are the other side effects of bezafibrate?

Stella❤

Evaibrahim60 profile image
Evaibrahim60

Hi Pat. I was on Ursofalk for about 17 years but the last I was itching badly till I stopped about a year and half now, they tried me on finofibrat Which I believe it’s similar to your one but it didn’t work for me nor stopped the itching. my itching is over now but not sure about my liver! Also I don’t think Ursofalk was doing much to me. Generally I feel better now and have gone through a reassessment of my case with no conclusive finding because didn’t want to do a liver biopsy, since there is no other treatment any way. However I‘m not telling anyone to stop medication unless discussed with doctors and well studied by the person him/herself first.

gardenfun profile image
gardenfun

Worked great for me, too.

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