Inclisiran - Safe?: Hi All, I hope you... - British Heart Fou...

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Inclisiran - Safe?

Dee717 profile image
13 Replies

Hi All,

I hope you’re all well.

Here I am some 7.5mths post-Op and after trying Astorvastatin and Rosuvastatin experiencing many side effects my GP has suggested Inclisiran as the next best option.

Is anyone on here taking it and most obvious questions are side effects.

NB. I’ve already read the article on Inclisiran on BHF which is useful so be great to hear from anyone whose taking the injections and for how long etc?

ThankYou All. Dee x

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Dee717 profile image
Dee717
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Di1967 profile image
Di1967

my own journey with statins hasn’t been good, I’ve tried 3 , atoravastin, rosuvastatin and pravastatin with debilitating muscle and joint pain, thankfully they were all tablet form and easily stopped. Within 2-3 days the side effects diminished and I greatly reduced my pain killers and reversed the pain and discomfort. After numerous try’s (over a year trying different variables) of every other day and slowly increasing the same discomfort returned I was even given ezetimibe to take alongside as a last resort. You would like to think your dr has your best interest as a priority…. My own dr now wants me to try the injections … after doing research on any cholesterol reducing medication even injections you are likely to react the same.

I am waiting on a triple bypass, I have researched as best I can and come to my own conclusion. I am not medically taught in any way, but would firstly say do your own research Our body does need cholesterol , for out brains to function properly, our cell regeneration, healthy muscles, it keeps almost everything working as it should. In countries that people live the longest they have high cholesterol and eat a Mediterranean diet.

Statins have far more side effects long term than just muscle pain, they can cause long term muscle issues ( many irreversible) , increase your risk of developing diabetes, cataracts, cognitive decline, increase risk of breast cancer in women on statins, reduce hormone balances

The real evil is toxic seed oil , highly processed food, sugar, lack of exercise. These cause inflammation throughout our body including our arteries. YouTube which you can view easily has some very good cardiologist and other drs who talk about statins, dr Paul mason, dr aseem malhotra ( has published work in bmj)

Again this is my own journey… I chose to completely change my diet, no seed oils, I now use coconut oil and olive oil, no refined sugar, no processed food, very low carbs, back to basics on how I used to eat as a young child. Since February I have almost reversed my pre-diabetes ( drs are well impressed with that one) lost 1 1/2 stone, would of been more but can’t exert myself but I try and move all day around a small house and garden. It’s not been easy but I feel I have more energy and a better chance of living without side effects from at least one of the drugs the drs have me on.

This is my journey of knowledge and self improvement, once I started to explore how pharma and the food industry are keeping us ill to feed us more medication and chemically processed food it all made sense.

If I’ve just made you think 💭 of researching yourself and making an informed choice then it was worth the 15 minutes of me typing this reply.

You can not change your mind once they have Injected you…. But the choice is yours

NannyPat1 profile image
NannyPat1

hi, I’ve had 2 injections of Inclisarin now through Harefield Hospital. Side effects are rare, it works through RNA apparently. First injection I had absolutely no side effects, second I got a very itchy rash round injection site. But I figure it’s worth it as LDL went from 3.3 to 1.2! I’m already fit, right weight, good diet without being too stringent so wasn’t much else I could do I thought.

Purple-Pete profile image
Purple-Pete

Hi,

I have been on the maximum dose of Atorvastatin for many years, but this was not enough, so a couple of years ago the put me on Inclisiran in addition to the Atorvastatin. I have never had any noticeable side effects to either.

Regards

The layman's answer to the question is Inclisiran safe is yes in that it been thoroughly investigated by the regulatory authorities who have certified it can be prescribed, with the proviso that it may have side effects that affect a minority of people which applies to all medication. Side effects will be listed on the patient information sheet which is available online. Inclisiran has only been available for prescription the UK for less than 5 years and due to the strict prescribing rules is only available to a relatively small number of people, although testing on sample groups was carried out before it was approved, so overall the experience group is limited certainly compared to statin users which runs into millions on a global scale.

Bigscar profile image
Bigscar

My story is on here somewhere I am coming up for 78th birthday 🎂 I had my op in 1977 a triple bypass at St George’s Hyde Park Corner (Now Tooting),Survived so many drug changes in that time I am now The Guinness World Record Holder as the longest surviving triple bypass patient in the World.

Think I have been on 3 different brand of Statins presently and for a long time I have been on Rosuvastatin plus ezitimbe(was that produced in Africa what a name!) I have had muscle injuries etc. but not from the drugs,I play walking football with quite a tough regime.A little while ago I snapped I thought my hamstring in right leg it could have been a tendon I was back playing in an incredibly short time.I can only say the drugs I am on have worked for me because at 31 when I had op. never though I would still be here now.Plus what I am still capable of amazes me.

Dee717 profile image
Dee717 in reply to Bigscar

Wow this is inspiring even if you didn’t directly answer my Qs regarding Inclisiran. 😊.

I’m only 8mths post triple bypass so hopefully another 40+ yrs to go!

Tabac profile image
Tabac

I've had four Inclisiran injections so far, next one due in July. Initially quite effective and halved LDL from 3.2 to 1.6 but has since gone back up to 2.3. The last injection made no difference to LDL level which stayed at 2.3. I've just started bempedoic acid in additon to Inclisiran and Exetimibe to try and lower the LDL below my target 1.8.

I get back ache for a couple of weeks about 7 days after an injection, initially quite bad for a couple of days then tapered off. The severity of the back pain has gone down as the effectiveness of the injection has waned and just the odd twinge after the last injection but symptoms lasted 4 weeks.

Talking to my GP the other week about how to proceed she said there is a big push to get people onto Inclisiran this year. She also agreed that it was odd that there are no side effects listed on UK sites. If you look at US sites they list common side effects which are generally mild. See section 2.5 of the link below.

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

Lowerfield_no_more profile image
Lowerfield_no_more in reply to Tabac

That's an interesting comment that your GP has made, that there is a big push to 'get people onto Inclisiran this year'. I assume she means only those who qualify under the strict rules that NICE and therefore the NHS have laid down, presumably mostly down to cost in that Inclisiran costs ££s and statins next to nothing. If you can't tolerate statins and need to manage lipids and/or your LDL levels are consistently above 2.6 even though you take statins then it appears Inclisiran is for you, but if statins are doing the job perhaps with an ezetimibe top-up which I take then there is no need to take Inclisiran.

Tabac profile image
Tabac in reply to Lowerfield_no_more

I had a phone call out the blue from my lipid clinic in January and was told they were ringing about me starting inclisiran but then they saw I was already on it. The doctor I spoke to said they were going through their lists to see who qualified for it.

An interesting article about pushing Inclisiran in the Pharmaceutical Journal from last December.

pharmaceutical-journal.com/...

Sb1171 profile image
Sb1171

Inclisiran is relatively new, but trials have thus far only revealed minor side effects, normally around the time/site of injection. There isn’t much in the way of research into longer term benefits as it is too new, but there are some theoretical benefits in addition to reducing LDL that are different from statins because it works by reducing PCSK9.

frontiersin.org/articles/10...

I haven’t experienced any side effects.

To be honest, I am not entirely convinced that reducing cholesterol is the mechanism by which statins reduce future risk (which research shows they clearly do), but rather that it may be due to an anti inflammatory or other protective mechanism.

Inclisiran clearly reduces cholesterol and does for me, but hoping that the theoretical benefits in terms of arterial protection turn out to be correct. Ezetimibe also appears to have other protective benefits beyond cholesterol reduction and is often taken alongside Inclisiran.

citygirl65 profile image
citygirl65

If this is the injection instead of statins etc then I'm sure I'm on it had two so far and it's but painful as it's oily but other than that it's fine.hope this helps

Jack2019 profile image
Jack2019

ncbi.nlm.nih.gov/books/NBK5...

This article states the long term safety and efficacy has not been determined.

I found this interesting. "Patients identified a need for treatments that can reduce bad cholesterol (LDL-C) and cardiovascular morbidity and death; however, there was not enough evidence to show that Leqvio would reduce cardiovascular morbidity and death. Results from 2 ongoing studies (ORION-4 and ORION-8) will contribute valuable information regarding the long-term safety and efficacy of Leqvio when results become available."

This was from 2022, I do not know if Orion 4 and 8 have been concluded. Perhaps your doctor can help.

Sb1171 profile image
Sb1171 in reply to Jack2019

I don’t think they are concluded yet. This leaves us in the position where we know Inclisiran reduces LDL significantly and there are theoretical benefits in terms of arterial protection. It should therefore reduce risk and mortality, but we don’t know yet that it actually does. It’s probably worth noting that if reducing LDL reduces risk than it must too, but we haven’t actually got good evidence of reducing LDL reducing risk (there is good evidence that statins reduce risk and they reduce LDL, but not necessarily that they reduce risk by reducing LDL). Having read as much as I can of the research I have made the personal choice that I want to take it (I can’t tolerate statins), more based on the likely protective benefits other than LDL reduction. I would also go as far to say that even if I could take statins I would still prefer to take Inclisiran if I could (although it wouldn’t be offered in that case unless the statins didn’t work). All you can do is weigh the evidence and make as informed a choice as possible.

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