inclisiran injection for cholesterol (Leqvio)

[Coffeelover2]

Hello all,

I’ve just been offered the inclisiran injection (Leqvio) for cholesterol.

Has anyone had it? Any side effects or issues?

wondering whether it is worth trying?

Thanks in advance

[Lowerfield_no_more]

You have likely been offered Inclisiran because you are statin intolerant and/or your LDL levels need better management. So if I were you I would be going for it. But like all medication Inclisiran will have side effects (which you can research online or find out from your local pharmacist) and which may affect some people, but you won't know if you are going to be one of those people unless you try it.

[Coffeelover2 in reply to Lowerfield_no_more]

Thank you. Have you tried it?

[Lowerfield_no_more in reply to Coffeelover2]

No I have not been offered Inclisiran because I don't qualify under the strict rules that the NHS have due to it's cost and the simple fact that it is not needed for the majority of people. Although my natural cholesterol is over 9 it is managed by statins and Ezetimibe and I do not suffer from side effects from either of these, and importantly my LDL levels are less than 2.6 which is one of the gateway criteria the NHS use for selecting people for Inclisiran.

[Coffeelover2 in reply to Lowerfield_no_more]

Interesting as they never suggested ezetimbie for me and also they could have suggested a stronger version of the statin but they just suggested the injection for me.

[dlowell]

I’ve taken it twice based on a private prescription (and would be taking a third shot but for the price). I self-administered it on both occasions and had zero side effects.

[dlowell in reply to dlowell]

I should have added that I got it to reduce my Lp(a) level. You should ask to have your Lp(a) tested - it’s not normally tested. High Lp(a) correlates with early atherosclerosis independently of other cardiac risk factors, including LDL.

[Coffeelover2 in reply to dlowell]

Thank you

[NannyPat1]

I’ve had it twice now with zero side effects and boy has it lowered my LDL. Definitely go for it!

[Coffeelover2 in reply to NannyPat1]

Thanks

[Sb1171]

I have had 3 injections so far. It has worked in terms of reducing LDL. The only side effects listed in the literature relate to soreness or rashes at the injection site. It is not a very pleasant injection. Quite a bit of liquid, it stings slightly and is a little tender for an hour or so after (not that bad though, easily tolerated and only once every six months) Other than that, no side effects for me.

[Coffeelover2 in reply to Sb1171]

Thanks

[Kristin1812 Heart Star]

I’m still on the trial which now focusses mainly on longer-term effects, but it has been OK’d for use now with people with heart problems if statins don't suit.

[Coffeelover2 in reply to Kristin1812]

That’s interesting. What information do they give you whilst on the trial?

[Kristin1812 Heart Star in reply to Coffeelover2]

Good information about the drug and mechanisms of the trial. Im not suffering any noticeable effects, but then I may be in the placebo group. This BHF article is really informative,

bhf.org.uk/informationsuppo...

[Hidden]

Hi Coffeelover 2, I'm post Bypass surgery some 18mths and I decided not to continue with statin therapy some 4 mths after the operation.

You don't say why you've been offered a drug to lower your cholesterol. Is it currently very high? Have you got heart disease? Are you statin intolerant?

Are you hoping that by lowering your cholesterol it will prevent future heart events?

I personally would think long and hard and weight up the benefits against the possible harm before embarking on any form treatment that involves preventing the liver functioning as it should.

However, I'm probably misguided and I'm sure you'll come to the right decision.

Good luck with whatever you decide.

Best wishes for your future heart health,

Denis

[Lowerfield_no_more in reply to Hidden]

It seems to me that nearly all medication has the potential for side effects in some individuals since, in order to 'correct' something that is going wrong within the body, the medication has to change how the body works in some way. However before any medication is released for use by the general public it undergoes a period of close scrutiny by the regulatory authorities to ensure that the benefits far outweigh the downsides, both in the short term and the long term, including consideration of management of some sort should an individual not respond as intended. So when an individual is offered approved medication to correct a medical problem, it is then down to the individual to decide whether on balance it is beneficial to take up that offer and proceed, and if an individual declines there really must be good reason in my view. So as far as lipid management medication is concerned some types do alter the way the liver functions, including statins and Inclisiran, but on the assumption that lipid management is considered to be necessary by the health professionals, and that particularly applies to Inclisiran, then the benefits of lipid management, the physical outcome of which cannot be monitored other than by intervention such as an angiogram, must surely outweigh the possible downside of decreased liver function which can be tested and is certainly one of the items that is on the annual blood test for those of us who take lipid managing medication.

[haynatcha]

Hi

I had the inclisiran injection about 6 weeks ago. Everything is fine so far - wouldn’t know I’ve had anything at all. Slight pain at the injection sight which lasted for a few minutes. I had a very bad reaction to statins which I took for 6 days following heart attack and ended up in hospital in severe pain. Everyone is different but inclisiran seems ideal for me.

[Coffeelover2 in reply to haynatcha]

Sorry you had to go to hospital. I’m glad you have found something that works

[winnabago]

I have been on that drug 284mg every six months, no side effects, really keeps my cholesterol in the normal range. I hope you have good health ins because it is very expensive.

[Coffeelover2 in reply to winnabago]

it’s on the UK NHS so I don’t have to fortunately

[winnabago in reply to Coffeelover2]

In the USA I have secondary insurance that covers the cost. It is about $12.000 per shot. Glad it is covered for you.

[Tabac]

I'd say it's worth trying and not to be too concerned about the six month period as the side effect I've had have only been for a couple of weeks. I'm also taking 10mg Ezetimibe. There is a lack of information because it's a new drug and who knows if there are any potential long term problems?

I've had four injections so far and the drug seems to have stopped having any effect so may stop taking it if a blood test just before the next one is due shows no further reduction in my LDL levels. My LDL prior to the first injection was 3.2 and it went down to 2.2, after the second injection down to 1.6 but had gone back up to 2.3 when levels tested just before third injection. I had my fourth injection in January and a cholesterol test four weeks later showed it is still at 2.3. The drug is meant to have effect by 14 days after the injection.

So overall a reduction from 3.2 to 2.3 which is above my target of 1.8. The lipid clinic asked to be informed if the latest injection didn't reduce level below 1.8. My most recent cholesterol check was a fasting blood test as the previous one which showed an increase was non fasting. All I've had so far in reaction to the increase was 'that's unexpected'.

I've never had any problem with the administration of the injection but have had side effects 7-10 days after each injection for about 2 weeks. These have been mild shin splints, back ache which has been a mixture of the odd twinge and couldn't bend down to put my shoes on for a couple of days and 48 hour cold symptoms which may or may not be related. I have yellow carded these effects and after my most recent injection had only a few back twinges so may reflect the drugs current lack of effect. The UK sites all insist there are no known side effects other than soreness at the injection site. If you look at overseas sites there are reports of side effects. Section 2.5 of this US government site lists possible adverse effects.

ncbi.nlm.nih.gov/pmc/articl...

[Coffeelover2 in reply to Tabac]

Thanks

[Kristin1812 Heart Star]

For full BHF information on Inclisiran, its mechanism (very different to statins) effectiveness, availability on NHS, side effects (very few, mainly with injection site) etc see

bhf.org.uk/informationsuppo...