New medication : Hello everyone, I have tried... - PBC Foundation

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New medication

Sallam profile image
5 Replies

Hello everyone,

I have tried to send this post twice and it has some how not been sent. I am so frustrated right now but I am desperate to know if anyone else has been prescribed this drug for lowering their ALP levels? The drug is called Bezafibate!

The information sheet inside the box states that people with liver disease should not take it. It also states that if you have an underactive thyroid you should speak to your doctor before taking it. And under side affects it says if you should develop an obstructive liver disease whilst taking the drug go straight to the nearest emergency room!!! I don't get it. If PBC ( blocking of the bile ducts is not classed as an Obstructive liver disease then what is it classed as. I know that PBC comes under the Autoimmune desease catagory but surely it's an Obstructive Liver desease aswell? Am I going mad or does the fact that my specialist even contemplating putting me on this drug make sense to anyone out there. Please I would be very interested to hear from anyone else who has PBC and has been prescribed this drug and if you took it and what was the outcome?

Anyway, I hope that this post will get to the right place this time cos it is nearly 2am and I am exhausted . Hope to hear from someone soon,

Good night my fellow PBC sufferers,

Sleep peacefully,

Sallam.

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Sallam
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mattiasw profile image
mattiasw

Bezafibrate did wonders for me: healthunlocked.com/pbc-foun...

Puddles profile image
Puddles

Hi Sallam,

I was put on fenofibrate (a very similar drug) 18 months ago after I stopped getting an optimal response with urso. I have had excellent results with it and my liver function tests are now pretty much all back within normal limits. I have had no adverse side effects. From what I understand fibrates have an anticholestatic, anti--inflammatory and anti-fibrotic effect in the liver ncbi.nlm.nih.gov/pubmed/246...

The recently presented Bezurso study which you will find links to in the thread mattiasw gave showed very promising results with bezafibrate and urso.

Wishing you all the best.

Hello Sallam.

PBC is apparently where our bile ducts start to become damaged and then disappear hence the bile then seeps into our liver causing inflammation.

PSC is the one where bile ducts are damaged a slightly different way from what I can understand and with PSC there is a tendency for bile ducts to become blocked.

Though I'd not heard of this Bezafibrate prior to seeing it mentioned on this site, it seems that a lot of prescribed medications seem to be given for certain patients of which it often states eithe rto be 'cautious' or 'not to use in...' liver disorder patients.

I know with the urso we take it's not recommended normally for patients with other certain liver disorders.

I think a lot of medications that we can be prescribed are usually given with the 'benefits might outweigh the risk' theory.

emerich profile image
emerich

Hi Salaam, I have been on fenofibrate ( similar)for just over a year and have had no problems.I am unable to take urso and statins and this has improved my lft results and cholesterol. I am sure anyone with pbc or other liver disorders will be tested regularly,particularly when first prescribed.

Melwoods profile image
Melwoods

Hi I have been given bezafibrate to try and combat the itching as all other treatment hasn't worked

I have just been taken off the Urso as the bezafibrate has brought my ALP down massively

It was over a 1000 at its worse

I get regular bloods taken to monitor everything however it still hasn't helped the itching

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