review of inclisiran

[Barrienorma1613]

I have been asked to have a drug called inclisiran to help with my cholesterol has anyone been taking this drug if so what are the side effects.

Barrie

[Lowerfield_no_more]

Try this...

bhf.org.uk/informationsuppo...

Inclusiran has not been available on the NHS for very long, added to which it is only offered to a relatively small number of people who have met the stringent criteria NICE and the NHS have laid down, so the numbers who are on it may not be very extensive. There were trials to test it's efficacy, and these may be ongoing, but it is my understanding that participants either took inclisiran or a placebo so they will have no surety in how it affected them.

However if you have been offered it, it is for good reason, and so I suggest you trial it and if it works and you get no unpleasant side effects fine, but if you get side effects then you can consider stopping it. But you won't know until you have tried it.

[Barrienorma1613 in reply to Lowerfield_no_more]

I just wanted a review from patient who had been injected with this drug to see what side effects they had .I am aware that this drug is expensive and will be having it on Thursday,thank you for your reply.

[Musicl in reply to Barrienorma1613]

Please can I ask how it went for you, as I am having the injection next Thursday? I am dreading it, as I am terrified of needles, but I have had a bad reaction to statins. I also have asthma, and I am worried that shortness of breath is a side effect of Inclisiran.

[Barrienorma1613 in reply to Barrienorma1613]

I had my injection last Thursday,I had the injection in my leg ,I have had a slight pain in my calf and been a bit more tired than before but that all .hope your injection goes well and you can also have it in the arm .

[Musicl in reply to Barrienorma1613]

Thank you for your helpful feedback Barrienorma1613.

[Jomo2021]

I have been on this for a couple of years, I was offered it as soon as it was available. No side affects, and my cholesterol went down significantly. The injection is very painful but after the first two you only need one every six months.

[Coffeelover2]

I’ve had one so far - no clear side effects from it. Haven’t had my cholesterol tested yet. They inject into your stomach so that was temporarily painful but went away quite quick.

[Thaifan]

I had one dose of inclisiran and had a lot of side effects. So GP and I decided not to continue with it. Caused major gastric issues to such an extent in order relieve the issue I tried going dairy free and it worked. Also within 6 months of going dairy free cholesterol went from 7. 4 to 5.4 and I only take lowest dose of Rosuvastatin 3 days per week as that is all I tolerate.

[JaneBrown55]

brilliant drug , no side effects at all unlike statins which I can no longer take due to them affecting my liver. It slowly lowers your cholesterol.

[Brandonsmum]

My gp surgery are just setting it up for me to have the injection, as they have never done it before. I'm hoping it will be more liver friendly for me than statins 😊

[JaneBrown55 in reply to Brandonsmum]

I had terrible problems with statins affecting my liver . This didn’t affect it at all . Very happy

[Davey77]

I turned it down because both the NHS & BHF websites said there is a 1 in 5 chance of respiratory problems and I already have Asthma

[Musicl in reply to Davey77]

I am in the same position, but what's the alternative if you can't tolerate statins?

[Barrienorma1613 in reply to Musicl]

I like you could not tolerate statins ,my cardiologist recommended a new drug inclisiran which my GP thought he would have to pay for out of budget but is payed for by nhs england I had it last week in my leg the only side effects is pain in my calves and bit more tired.but a lot better than the side effects of statins my next injection is the end January then every 6 months from then.hope this helps contact your GP for access to inclisiran and don’t be put of.

[Brack1]

I am on the VICTORION REAL trail for Inclisiran and have been receiving it for a year now. It is an open label trail, i.e. everyone on the trial gets the active substance and effectiveness / side effects are assessed.

It is certainly very effective; it reduced my LDL cholesterol from 5.6 to 2.17 within 3 months. I am on the trial because I have mixed dyslipidaemia, and had both a TIA and an NSTEMI resulting in two complex stents at the LAD/D1 junction – but that’s another story.

I have tried all the statins and I got crippling muscle pain and tendonitis from all of them, to the extent that I had to cease taking them. Ezetimibe was also a disaster, resulting in acute pancreatitis and a 27 day stay in hospital, so Inclisiran is my last resort.

I have probably had some side effects. According to some of literature around 11% of those who take it get raised blood sugar, but this is not confirmed. If it is correct however, I seem to be one of the unlucky ones. I suspect it has pushed me just over the limit from pre-diabetes into type 2 for which I now need to take Metformin – the increase coincided with the first blood teat at 3 months. I have also had some joint and muscle pain like I had with statins, but much less severe and certainly liveable with. I have had had no issues with pain or irritation at the site of injection or nasal irritation which seem to be the most common side effects

I cannot really say for certain if either of the above issues are due to Inclisiran. Both my parents were Type 2 diabetic in their 50’s and I guess I must expect some stiffness and joint issues at 71. Especially after living a very physical life. That after all is what the clinical trial is there to statistically determine.

This is a personal perspective and it is not proper for me to give advice, but looking back I would certainly accept the offer again. I am told it costs the NHS £360 per shot.

[Emgee1]

My other half is receiving Inclisiran injections. So far she’s had the first 2 with the next one in 6 months time.

The affect on her LDL has been dramatic and it’s now under 2 as her cardiologist wanted. There haven’t been any side effects.

The only down side has been that she’s had to have the injections at the hospital as the GP won’t do it. It’s a little more inconvenient, but no big deal.