Inclisiran

[TeflonT]

Hi all, anyone else signed up as test subject for inclisiran. Research programme is over 5 years. Injection every six months. Alternative to statins.

[Hidden]

See here last para

healthunlocked.com/bhf/post...

If its the Orion4 trial you have enrolled in, I was told half the participants get inclisiran, the other half a placebo, and you don't know what you are getting.

[TeflonT in reply to Hidden]

Yep, same trial. First injection in couple of weeks, then same in 3 months. Every six months after. Apparently everyone gets the placebo first, then they do the randomisation. Given they already have 8,000 people in the trial I was just wondering what peoples experience might be so far.

[Chappychap in reply to TeflonT]

If I thought I might benefit from Inclisiran (and for people with FH for example it's apparently transformational) then I'd still want to be part of this trial.

Firstly because there's a 50:50 chance you'll receive the medication, which is far better odds than you'd get from not being in the trial. And secondly because when similar trials have shown an overwhelming advantage for the tested drug they've sometimes decided it would be unethical to withhold treatment from the placebo group, and given the drug to everyone in the trial...but of course you have to be in it to win it!

Good luck!

[Jomo2021]

Not a trial, but I am on inclisiran. It’s cut my cholesterol by 50% with no side effects. Amazing stuff!

[Hidden in reply to Jomo2021]

That's good to hear 👍.

It would be good to know what your LDL level was before you a started and what is it now.

And how did you get put on to this medication?

If you read my linked post above you will see my GP is claiming lack of information on administering Inclisiran some nine months on since it was approved for NHS use, which is preventing me being assessed.

[TeflonT in reply to Hidden]

Hi, LDL currently just over 2 on Rosuvastatin. I was approached by hospital and invited to join the trial. Checked in with GP first and he had no objections as it’s not supposed to be an issue with my usual meds.

[JennyRx in reply to Hidden]

GPs can’t prescribe Inclirisan, only secondary care - eg hospital so he will need to refer

[gilreid1]

Yes I have been asked to take part in this trail. My first appointment is twenty fifth of august

[Hidden]

Hi there. I have the inherited bad cholesterol and after trial and error of several different statins it was found I couldn’t tolerate any of them plus they didn’t lower high levels anyway. I’ve been given the fortnightly injection of Praluent and so far so good. 7 months in and levels have reduced from 8 to 6 so some improvement there. No side effects so far. I know very little about Inclisiran but if it’s being offered via trial I would certainly consider it if I was you.

[JennyRx]

My lipidologist was going to put me on Inclirisan but changed his mind and put me on Repatha instead. He’s been part of a research programme with Repatha and he felt he’s not got enough data on Inclirisan yet whereas he’s familiar with Repatha. My LDL has dropped below target level so all good.

[nellie237]

Hi TeflonT,

I was invited to take part a couple of years ago.........went along for the appointment in a pretty dingy room at a hospital where a nurse took blood (think it was a finger prick test if I remember correctly), but was rejected because my cholesterol wasn't high enough (due to taking 40mg Atorvastatin).

I was a bit miffed really. It took me 45 mins to get there by car.......to pay expensive car parking..........for a pharma company. I felt that it might have been more considerate to ask me for my latest lipid results before I wasted my time and money.

[Edit gilreid1 ........ just noticed you have been invited too]

[TeflonT in reply to nellie237]

Hi, I was accepted on the basis of the finger prick sample. Although my GP test results showed LDL a bit lower. Nurse gave me a code to quote to get free parking. Fuel costs offered but I declined, as not too far for me.

[Jonathan6766]

Started Inclisiran (+ Atorvastatin) a week ago. Not a trial though. No side effects yet other than swelling at the injection sight for a couple of days.