Just thought an update might be interesting as a few members have recently reported being prescribed this twice yearly injection.
I am on the 5year study of 15,000 people globally, of 55+ years with heart/stroke history and of procedures to unblock arteries. I was enlisted 4 years ago, and have had injections and regular twice yearly assessments, bloods, and support, noting any other health events, interventions, meds and symptom changes and any hospitalisations.
It’s a double-blind trial, so I’m not sure if I am on inclisiran or a dummy.
It would be interesting to hear how anyone on it, is getting on.
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Kristin1812
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Dear Kristin1812
I’m not on this drug but would love to know what it used for please, just as interest , thank you
Ah. Apologies… In my very simple understanding, it lowers cholesterol, but is a different chemical mechanism to statins.Not sure if it’s likely to be self-inject.
Hi. I was interested and relieved to see someone menton this new drug.
I have been been diagnosed as being 'high risk and therefore a suitable candidate for Niclisiran.
I have heart murmur, sticky valve, blockages in carotid arteries and circulation in legs is not that good. Apart from BP medication , I take Ruvastatin and Extimibe ( think that's how it's spelt) and aspirin.
Last blood test showed bad cholesterol level to be 2.9 and that is apparently too high.
Pathologist is keen to administer first dose of this medication at my next appointment in a couple of months. He assured me that there had been no significant adverse reactions reported with the drug and I agreed to 'go with the flow'.
I have since been doing a fair amount of Googling and it seems that there is no data on severe adverse reactions. Does this mean that none have been found, or is the drug company not ready to share this information. ?
I am rather nervous about going ahead with this as I had problems with statins in the past.
I see you don't know if you are actually being given the drug or a placebo so it would be unfair of me to ask how you are reacting although it would be interesting to know if your cholesterol levels are improving.
This doesn't help you at all. Sorry. Since the drug has not long been given the 'all clear', it may take time to get some feedback. But you will know that. Well done you for taking part. When will you know whether you have been given Niclisaran or placebo?
I’ve got one more year on the study. We continue with usual statins, as well. Not sure of my cholesterol levels, either before or now…….you made me realise how un-enquiring I have been! Sorry.
I think you are amazing. So matter of fact about things. I have a friend like that and she happily takes anything she is prescribed without question. Having had various side effects from medication, I am a little.more wary. I am surprised though, that you are not sure about your cholesterol levels, especially given the nature of this new drug. Having said that I guess you ,don't really need to know as you are being monitored and things appear stable. Doctors always honed in on my cholesterol levels and blood pressure to the extent I became paranoid. I was treated like a naughty child when I took myself off one BP medication due to side effects. Nightmare patient me.
Hello Kristin1812.. I hope you don't mind. Just a follow up to my earlier reply. All seems to be quiet on the subject of Inclisiran. How are you doing? I have not yet had the injection and am still nervous about doing so. It would be comforting to hear from anyone who is undergoing this treatment. You are very brave to take part in the trial. I take my hat off to you. We could not progress if everyone was a ninny like me..I am sure I am not the only one who is anxious to know how you are doing. X
I really haven’t noticed much change. On this study, everything else is kept as normal for the 5 years, so it’s not really at all brave. But thank you, anyway!
It’s difficult to be reassuring…..because it’s a double blind trial, I can either have a placebo or the active drug, but none of us know which. I haven’t noticed any real changes.
My guess about publicising the side-effects is that, though all these are monitored, they won’t do this till the trial ends, and the figures are analysed.. I still have a year to go.
I still think you are brave as I am still dithering and dreading notification of my next hospital appointmen when I have to decide whether to go for this drug. I can find little recent mention of Inclisiran on HU .Thank you for being there and responding. X
Hello Nora-B, I have found your post about Inclisiran and wondered if you did have the injection. I have been invited to take part in the Orion 4 research study so would be interested to know if you or anyone else has had any side effects.Hope all is well with you even if you decided not to have the Inclisiran injections.
I’ve had no unusual side effects, though it is double blind. I may not be on the active drug. I also understand it’s now registered for limited use clinically, though the trial continues for longer term effects and I guess to have bigger numbers to look in more depth at sub groups, and interactive effects.
Thanks Kristin, I suppose I really need to hear from someone who is being prescribed Inclisiran by their GP and have stopped taking statins. They would know if they had any side effects and whether their cholesterol levels had improved.
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