New medication

[Giveadogabone]

Has anyone been on PCSK9?

[Alison_L]

Hi Gadab. Hopefully you mean PCSK9 inhibitors? I don't know about them, but found this article from 2018 on the BHF website.bhf.org.uk/for-professional...

[Giveadogabone]

No I am not on it, but I hear it is possible to be referred to a lipid clinic and assessed accordingly?

[JennyRx in reply to Giveadogabone]

There’s very strict criteria for these meds. They’re for patients with intractable cholesterol with FH. So all sorts of options are offered first before they go down that path. I have very high lp(a) and in other countries I would be given one of these but the NICE criteria doesn’t include lp(a) patients.

[Giveadogabone in reply to JennyRx]

JennyRx, excuse my ignorance! What is lp(a)? I had my heart attack on holiday in Spain, the reccomendation to treat with PCSK9 inhibitors was made by doctors there.

[JennyRx in reply to Giveadogabone]

Lp(a) is an independent risk factor for HA and is genetic and largely untreatable. The only way to ‘deal’ with it is to aggressively attack all other HA risk factors - smoking, obesity, lack of exercise and LDL. so have to reduce LDL to much lower levels than the normal ‘healthy’ range. My lipidologist says I don’t fit the criteria for PCSK9 inhibitors under NICE guidelines. You have to have very high lipid levels that can’t be lowered by statins and/or ezetimibe before you’re even considered in the U.K. The criteria are based around the estimated reduction in cardiac events and strokes for a particular clinical pathway. So you would have to be assessed and started on appropriate oral meds for a long time before you are likely to get near a PCSK9 inhibitor unless you’ve already explored those options already and your ‘bad’ cholesterol stays intractably high.

[Giveadogabone in reply to JennyRx]

Thanks JennyRx. I might ask for a referral to a lipidologist. I am a type 2 diabetic, on statin , ezetimibe, just slightly underweight and working hard to bring LDL levels down😳I don't drink or smoke. I tested positive for covid on the 2nd Jan. It was very mild and I had none of the expected symptoms, other than what send like a winter cold. Can't help feeling really anxious all the time though. I have not had a follow up with the cardiologist since January 2019!

[Giveadogabone in reply to Giveadogabone]

😊..what seemed like a winter cold.

[JennyRx in reply to Giveadogabone]

I’ve not actually seen a cardiologist except for the cardiologist perfusionists when I had my angio and stents. They just sort out the plumbing My original appointment at the rapid access clinic was with a nurse practitioner. And I appear to be discharged but even my GP can’t work out if I am or not. I’m still under the lipid clinic though. Which I’m happy about as this is all about prevention. A lipidologist will do all the genetic tests. You need to be referred by your GP. I’ve only had telephone chats with the lipidologist and the nurse at the GP surgery does my three monthly bloods. I am pre diabetic but I’ve nearly reversed that which the lipidologist is really pleased with. Phew.

[Giveadogabone in reply to JennyRx]

That's amazing Jenny! Are you on a low carb programme?

[JennyRx in reply to Giveadogabone]

Yes. I’ve dropped 5 points on my HBA1C. But it’s hard to keep it up sometimes. I have next test in March and hopefully will still be going in the right direction.