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inclisarin

NannyPat1 profile image
13 Replies

Does anyone here have Inclisiran injections to lower LDL?

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NannyPat1 profile image
NannyPat1
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13 Replies
Autumn_Leaves profile image
Autumn_Leaves

Is this a PCSK9 inhibitor? I don’t have personal experience but I think this kind of medication is for people with familial hypercholesteremia rather than for cholesterol that’s a bit higher than they’d ideally like. I assume it’s been prescribed by a specialist rather than a GP?

Autumn_Leaves profile image
Autumn_Leaves

Some medications can only be prescribed by a specialist or the GP can under the instruction of a specialist. I know that some clinics have lipid specialists but you’d only get a referral if you have genetic/familial reasons. I had a friend who was diagnosed with familial hypercholesteremia and she was totally in shock. She was otherwise in good health but seems her genetics weren’t exactly in her favour.

Kristin1812 profile image
Kristin1812Heart Star

it is getting more available, but is restricted by a few particular criteria.

I think I heard its available now from GPs but has to be overseen by Hospital Consultant.

I’m on the Orion double blind, long-term study, so I may or may not be on it,

I wouldn't qualify otherwise, as I tolerate statins fine,

cornetto profile image
cornetto

HI I am on a psk9 inhibitor think they are similar I inject once per fortnight It's working well at the moment

Swalecliffe88 profile image
Swalecliffe88 in reply to cornetto

Hi Cornetto I am on this one too. Since my consultant saw me in March. He gave me script for six months so I am still waiting to see if my gp will be able to do my repeat next month. I am really hoping it works better. I have the familiar thing he thinks as at 69 I am the longest surviving member of fathers family all dying of heart disease. But also statins have not worked in reducing cholesterol and I have not been able to tolerate even the lowest dose of about 5 different brands.

Autumn_Leaves profile image
Autumn_Leaves

I hope it’s working well for you.

Heyjude31 profile image
Heyjude31

Hello, sorry I have only just seen your post. I am on the ORION trial for injections. Not sure if I am on the placebo or the real thing. However if you can’t tolerate statins from what I understand it is a good treatment x

Butterfly_flutterby profile image
Butterfly_flutterby in reply to Heyjude31

Hello. I am also on the ORION trial and not sure if I'm on the placebo or the real thing. I can't tolerate any of the Statins but I take Ezetimibe which is better than nothing 🙂

Trevor29 profile image
Trevor29

hello NP!

My cardiologist referred me to the lipid clinic at my hospital. The clinic put me on Inclisiran and it has had a dramatic effect on my cholesterol. Total is now 2.6 and LDL is 0.2. The lipid consultant also told me that heart disease is reversible when cholesterol is maintained at ultra low levels.

I can tolerate statins and still take them but they were not getting my cholesterol levels low enough. My advice would be to get this drug if you can.

NannyPat1 profile image
NannyPat1 in reply to Trevor29

Trying too! Cardiac nurse said you have to have LDL of 2.6 or above b4 she can ok it. Mine’s 2.2 with a lot of effort so gonna eat normally for a bit and have a few treats and that should do it! 🤣

Trevor29 profile image
Trevor29 in reply to NannyPat1

or move to Scotland or Wales where I believe they are a bit more generous!

Vickyvix profile image
Vickyvix

I'm on it. The injections sting a tiny bit, but other than that no side affects. I'm intolerant to statins and tried bempedoic acid, but had issues with my tendons. After less than 3 months (1st injection) it brought my cholesterol down from 6 to 3.9. After 2nd injection at 3 months its then 6 monthly. Happy to answer any questions if you have any

NannyPat1 profile image
NannyPat1 in reply to Vickyvix

thx

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