Inclisiran: I have been invited by Univ... - British Heart Fou...

British Heart Foundation

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Inclisiran

Bradshaw278 profile image
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I have been invited by Univ of Oxford to take part in a medical research study ORION 4 to find out whether a new cholesterol lowering injection safely lowers the risks of heart attacks and strokes in people who have already had one of these conditions. The drug is called inclisiran and has already been in use for patients with heart and circulatory problems and continue to have high bad cholesterol levels despite statins. Has anybody on here had experience of this drug?

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Bradshaw278
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MichaelJH profile image
MichaelJHHeart Star

If you search on Inclisiran you will find nearly 20 posts about it!

Like you I was invited to join this trial back in 2019. I had all the interviews at my local hospital and was all set to start then the pandemic intervened, and the project was put on hold. Recently I found out that I cannot rejoin because my local hospital cannot support it any more due to pressure of work. If you research Inclisiran you will find it was approved by NICE at the end of last year for general use (certainly in England), in addition to taking a statin . However there are many strict 'pathways' (hoops) to go through to get it prescribed if you are a possible candidate. A couple of months back I contacted my GP about my suitability for this medication (I tick many boxes) but was told they had not received the 'training' to adminster it, even though many months had passed by since the go ahead by NICE. I gave up and haven't bothered again.

annpavitt250448 profile image
annpavitt250448

My husband was asked to do this but when he went to hospital his cholesterol was not high enough.😀

Bradshaw278 profile image
Bradshaw278

Since posting I contacted the Study and was asked a series of questions. I had prostate cancer over two years ago so am apparently unsuitable for the study.

Kristin1812 profile image
Kristin1812Heart Star

I've been on the study for about four years. No noticeable effects, and I'm kept on the same meds etc. If you search Inclasartin here, a few of us describe the experience in more detail.

Chappychap profile image
Chappychap

There's a wonderful series of videos from the BHF, if you search you'll find one about statins that contains quite a lot of information about Inclisiran. It's an amazing drug that can deliver outstanding benefits, and for those people with Familial Hypercholesterolaemia it's a potential life saving breakthrough.

We all need to make our own choices, but personally if were offered this opportunity I'd grab it with both hands.

Good luck!

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