Hi would really like some advice from anyone who has had the inclisiran injection. I had a bad reaction to atorvastatin and rosuvastatin, currently taking ezitimide. Cholesterol at 3.4 but they want it to be 1.8 and I’m being told the injection is my only option. I am very anxious and scared of having a bad reaction. So any information will be gratefully received. Thank you
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Hello @Jennifer1 - welcome to the community.
I read your post with interest and would like to offer some help, but I am not sure I know or understand enough about your personal situation to advise.
Firstly I had never heard of this inclisiran injection and so had to look it up. As I understand it, this is an alternative to statins and given to patients with cardiovascular disease or genetic high cholesterol (familial hypercholesterolemia) who cannot reach cholesterol targets with oral meds.
Further, Inclisiran is a long-term, twice-yearly injection used to significantly lower “bad” (LDL) cholesterol in adults with high cholesterol or mixed dyslipidemia.
My guess is you already know this.
From what you say you are not able to tolerate the statins and your doctors would like your cholesterol to be lowered though currently it is 3.4 which seems low to me, but I guess it might depend on which measure is being used. But clearly from what you say your doctor wants it lowered to 1.8 and the only way to do this is for you to be put on the inclisiran.
My questions if I was in your position would be
- Why does my cholesterol need to be lowered from 3.4 to 1.8?
- What would happen if I choose not to have the injection?
- What reaction (side-effects) are associated with the use of inclisiran?
- Is my anxiety or fear that of injections (needles) or the drug?
Perhaps by asking these questions I may then be able to decide which option I would like to take.
RIght now the options are
- Do nothing i.e. keep the cholesterol at current levels
- Take injection twice a year and lower it
But the key question remains why is there a desire to lower the cholesterol from 3.4 to 1.8?
I am sorry I am unable to offer anything more ocncrete than this and I wish you all the best.
Namaste|
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Thank you for your response. It is the ‘bad’ cholesterol that is 3.4 not the overall figure. so I have been told to lower my risk of another stroke or a heart attack it needs to be 1.8. My fear is side effects, I was very ill after the atorvastatin and the rosuvastatin, and so I am worried that any effect will last for the whole 6 months that the drug is active. so I was just hoping that someone who has had the injection could reassure me. 
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Hi @Jennifer1,
Inclisiran is new to me, but I do have the advantage of an in-house expert who has explained a bit about it to me (my wife was a medicinal research chemist for 20 years). Here’s my understanding of it.
Your liver is responsible for making cholesterol (which is an important metabolic component - we shouldn’t see it as exclusively bad) but when it can’t make enough to help you digest food, make hormones or absorb vitamin D it reabsorbs cholesterol from the blood stream. Recycling in action 
!
Statins block an enzyme that the liver uses to make new cholesterol, so it has to use more of the cholesterol that is already circulating. With less new cholesterol being made and more being recycled it should reduce overall levels in the blood, but for some people that’s not enough or they just can’t tolerate statins at all.
Inclirisan is a PCSK9 inhibitor which works another way. While statins primarily reduce cholesterol production with reuse of existing cholesterol as a secondary effect, PCSK9 inhibitors trick the liver into hoovering up much more cholesterol from the blood so it doesn’t have to create more. They’re usually used in combination with statins, but can be used on their own when statins aren’t tolerated because they work in a different way. Of course, that doesn’t mean that there won’t be side effects but you would be quite unlucky to be intolerant of both.
I’ll stress now that this is a layman’s description of a very technical subject. Please check everything with your doctor and make sure you understand the risks as well as the benefits. But also remember that reducing LDL after stroke is an important part of managing your risk into the future.
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Thank you, I think my extra anxiety comes from the fact I had sepsis, a distended gall bladder, kidney infection ,drug induced hepatitis and a deranged liver all at the same time. And I had believed this was all linked to the statin
I have now been told the sepsis and kidney infection were totally unrelated. they just happened at the same time. But I’m struggling with the worry of being really poorly again .
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Wow, I’m not surprised that you’re worried. I hope your doctor can put your mind at rest and find the medication that works for you.
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Paul @harimanjaro - you have done an excellent job of translating a technical subject in layman’s terms after consulting your in-house expert 
I think this explains very well what inclisiran is and how it works - thank you!
@Jennifer1 - I think you should feel suitably reassured and with the knowledge that you may have been unlucky or rather your body was unlucky to have to deal with a cocktail of drugs or conditions caused by a cocktail of drugs.
Nevertheless, I will say as I always do, all medicines come with a risk which may manifest itself in the form of side effects. So it may address the immediate issue, in this case the reduction of the bad cholesterol, but it may cause other conditions and these may depend on your body chemistry, your overall health and hence your ability to tolerate these drugs, any other drugs you may be taking at the same time and in some cases foods in your diet.
So when taking any medication, I make it a point to first read the leaflet that comes with all medicines and if not available to check a reliable source of information e.g. the NHS website or the drugs.com website. After familiarising myself, I am armed with all the information I need to be ready act on anything that happens once I start taking the medication.
Not all people are adversely affected but I don’t want to be the 1/10, 1/100 or 1/1000 who is.
I wish you all the best.
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…to follow up on ManjiB’s line of thinking…
This is Dr. Kendrick’s most fundamental argument. On his blog, he has been very direct: “THERE IS NO EVIDENCE THAT INCLISIRAN WORKS” . He acknowledges that the drug does lower LDL cholesterol, but he argues this is a “surrogate endpoint”—a substitute for the real goal.
According to Dr. Kendrick, what truly matters are “hard outcomes”: does the drug prevent heart attacks, strokes, or death? He states that during its approval, Inclisiran had “no evidence that it provides any benefit, on any clinical outcome” . In his view, approving a drug based solely on its ability to lower a number in a blood test, without proving it helps patients, is a major flaw in the system .
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It is my belief that most medicines are approved in this way. Many studies that lead to approval are sponsored by “Big Pharma”.
My personal view is medicines in the main may offer benefit in the short term e.g. ease pain but as preventative medication, I am not convinced.
Also, due to the diversity of the human population, there simply cannot be a definitive study or group trial.
But each of us have the ability to make choices and we should make these choices based on our personal beliefs, fears, preferred lifestyle etc.
As at today, when it comes to strokes, I firmly believe they cannot be prevented, however, the risk of having a stroke may be reduced either through use of medication or through lifestyle changes.
Sadly, the pace at which information moves these days and the ability to spread misinformation and indeed create misinformation makes it hard for Josep Public to make informed choices.
I wish everyone a healthy and happy life based on their own choosing
Namaste|
Hi @Jennifer1
Welcome to the community, it sounds like you’ve been through an awful lot and it’s understandable that you would be feeling anxious.
I can see you’ve had quite a few responses from our members which I hope has been helpful for you. If there is anything you need whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Anna