cholesterol injections

[Kimberly07]

I’ve just had a telephone consultation with a lipid doctor and he has said I’m the ideal candidate for the new cholesterol injections but his confused me as he said the injection is fortnightly but reading up on it it states twice a year. Anyone know anything about these jabs.

[Kimberly07]

Thankyou for your reply yes he did say I would be trained to do them myself. I’ve tried every statin there is and not had any success so this is why I’m having injections just thought I heard him wrong when he said every fortnight as I’d read they were twice a year . Fingers crossed these work as mine is hereditary

[Dovaston]

Hi I am Statin intolerant and have been on Repatha self injections for the past 6 weeks. I inject fortnightly and it is very easy to do. I think there is another drug which is perhaps twice a year which does the same thing. Depends which you are prescribed ! 😊

[Kimberly07 in reply to Dovaston]

Ok thank you for your reply. Yes I called them back and they said mine will be fortnightly hopefully this will work. Dreading doing the injections but I suppose you get used to doing it hope it’s in the arm !

[Dovaston in reply to Kimberly07]

You will be fine it really is straightforward to do. After consideration I did mine in Thigh as opposed to Tummy or Arm but whatever suits you obviously. Good Luck 😊

[AndyM69]

Hi there

There is a very new injectable that has been approved for use recently and that is given every 6 months, it’s called Inclisiran. I believe it is given by GP surgery’s but it seems like the funding is dependent on the area you live in.

This area of medicine is moving very quickly at the moment, but it is good that there are options available to us.

I did a 3 month trial on the fortnightly injectable and it was fine, you really do get used to the injections very quickly.

Andy

[Hidden in reply to AndyM69]

Inclisiran has been 'greenlighted' for prescription by the NHS following approval by NICE late last year. The rules for its use are quite rigorous however and generally only applicable at the moment to those who have known heart disease and whose LDL cannot be consistently lowered below 2.6 by statin treatment alone. As I understand it is used in a parallel with statins not instead of.

[AndyM69 in reply to Hidden]

The rules for all of the injectables are strict, whether they be fortnightly or 6 monthly as they are new drugs with an expensive price tag.

The fortnightly injections and the twice yearly injections work in slightly different ways and will have their own prescribing criteria.

As you have stated, there is a pathway for the treatment of high cholesterol, diet, lifestyle and statins being the first choice, then additional medications if those changes are not successful.

If a consultant has suggested starting the medication then they must believe the criteria has been met.

[Kristin1812 Heart Star in reply to Hidden]

In the Inclisiran study! (which I am on) the 6 monthly injections are in addition to my usual daily statin.

[tunybgur]

I have been invited to be part of a 5 year clinical study of Inclisiran, it's called Orion-4, this is the twice yearly injection. I understand it is a double blind study therefore I may be on the drug or a placebo. I will still take my normal statin during this trial.

What I don't quite understand is, if I am on both drugs how will this affect my LdL/HdL etc? If I am on the placebo obviously there will be little change, but if I am on Inclisiran won't my cholesterol levels be too low? The booklet accompanying the invitation doesn't go into this detail but it is obviously a question which I will need answering if I decide to take part.

Interested to know if anyone has any experience or knowledge of this trial?

[Kristin1812 Heart Star in reply to tunybgur]

Yes, I have been on the Inclisiran study for about 3 years. I understand the purpose of double blind is to assess the effects of the active drug, over and above the placebo. Your comment about placebo effect isn’t quite right, it can actually be quite large, and possibly higher if you know you are taking one.. So the results will sort out if the active drug effect (taken blind) is higher than the placebo effect.If you don’t qualify by pretty strict criteria to get it, then, at least you have a 50% chance of getting it if you are on the study.

[tunybgur in reply to Kristin1812]

Thanks, I will offer my services but of course I may not qualify with my numbers. I'll keep posting....

[Kristin1812 Heart Star in reply to tunybgur]

Hope it works out. Let us know how you get on. There has been a bit of interest here, in the study and in the drug.

[Kimberly07 in reply to Kristin1812]

I will keep you updated

[Hidden in reply to tunybgur]

If you are like me you were probably invited to the Orion 4 study on the recommendation of your GP given your heart disease situation, plus high cholesterol with high LDL in spite of max statin, lifestyle etc. I imagine the whole purpose of the trial is to confirm on a large sample group how LDL and other lipids move to a more favourable position with continuation of statins, given that there will have been smaller trials which have broadly set the parameters. If the drug was considered to be in any way 'unsafe' it would not have been approved by NICE or other regulatory bodies.

If you are in any doubt how the drug may affect you, you are well advised to discuss this before you start the trial as you intend to do. There will be plenty of opportunity to ask questions, and the pre-trial screening is thorough.

Unfortunately the recent pandemic got in the way of me participating just as I was about to start, and now my local hospital have decided to pull out of the trial so I am no longer part of it.

[tunybgur in reply to Hidden]

Thanks for your reply, it's nice that they think I may still be around in 5 years....👍

[Kimberly07]

Hi lowerfield thankyou fir your reply but nothing had been mentioned about being a trial. My doctor recommended me to the lipid consultant as they didn’t know what else to try as I’m intolerant to statins I have been on every statin and experienced very bad reactions. This is the reason they’ve suggested I have the fortnightly injection

[Hidden in reply to Kimberly07]

My reply was aimed at tunybgur. However it's good you have been accepted a possible candidate for injection based treatment. When I asked my GP about Inclisiran recently I was met with a position of 'can't do' rather than 'how can we help?', even though they had put me forward for the Orion 4 trial!

[valeriep]

It sounds like your doctor is recommending you for the fortnightly Repatha injections. I've had them for about 2 or 3 years, because the cause of my high cholesterol is also hereditary. They are quite easy to administer - you can inject in your arm, stomach or thigh - and it's like pushing a biro down into your skin and then pressing down the top, which inserts the needle for you (you won't actually see it). They are usually taken in conjunction with statins, but if you can't tolerate statins, they may decide the injections are better than no medication at all. They can bring about great results with otherwise stubbornly high cholesterol!

[Kimberly07 in reply to valeriep]

Thank you valeriep fir your reply that has put my mind at rest I was imagining the needle like when you have a blood test and I don’t like seeing the needle, my to is hereditary thank you again for explaining x

[valeriep in reply to Kimberly07]

I'm the same, Kimberly. I always have to turn away when they're doing a blood test, so I thought you might be reassured to hear that you won't see the needle! 😉 Honestly, it's really simple and they'll let you practise with a dummy (no needle or fluid in it) before they give you the prescription.

[greenfingers]

More money for Pharma, they don’t care about your health as they’re too busy making money from us. We need cholesterol as we get older to fight off infections.

[Kimberly07 in reply to greenfingers]

Would you not worry if your cholesterol was high then, would you not take any kind of medication?

[greenfingers in reply to Kimberly07]

The first thing I would do is look at my diet, low carbs is one of the main things. Some people have naturally high cholesterol and no matter how much medication they take it wouldn’t make any difference. You have to do what is right for you but after reading Dr. Malhotra’s book A Life Without Statins I’ve looked at it from a different angle. He is a well known Cardiologist not some random person. Take care.

[Kimberly07 in reply to greenfingers]

I am on a very good low carb diet also exercise daily but my cholesterol is hereditary I’m intolerant to statins and as my bad cholesterol is so high that’s why they want to start with the jabs. But thank you for your reply and I will see if I can get hold of that book I would be very interested to take a read. Thank you

[valeriep in reply to greenfingers]

That 'naturally high' cholesterol is what killed my father and his mother from heart attacks when they were in their early seventies, despite their healthy lifestyles. Drug-free, my cholesterol level runs at 14.5, so I'm hoping to improve on the familial death rate with the help of Pharma.

[seeking-answers]

Hello Kimberly07;

Thank you for asking this question, very timely indeed! I too have family issues with cholesterol and am very, very intolerant to statins (3 of 4 family members are also intolerant: seems to be a "family thing" all over).

Last week I finally was finally allowed in to the cholesterol clinic and told I too needed to be on an injectable. They spent considerable time explaining the process of how the drug Repatha works, and also why I needed it with my history (Stent in LAD at 58 years old- total blockage- yuck). So I am awaiting the approval from my insurance and will get a "class" on how to inject.

Please let us know how it goes with you. I would be very interested in hearing how others do with it. Reading the chain of info above is indeed very helpful. I don't do well on drugs and really don't want to take it, but trying to be positive since there don't seem to be many other options. We do what we have to do.

[Kimberly07 in reply to seeking-answers]

Hi seeking answers sorry to hear your in the same boat as me. I’ve just had a call from my gp today saying they’ve heard from the consultant and that there arrange for a nurse to come to my home to do the first couple of injections then she will show me and watch me do them and once she’s satisfied I’ll be ok I can then start doing them myself. I’m just praying I don’t get a reaction as once it’s injected it’s in there. Unlike the statins which I had to stop immediately after 2 weeks of taking them and that happened with everyone as I said they’ve had me try all the statins there are. So like you they said I don’t really have an option and I need something as mine to is hereditary. I had a stent like yourself after a major HA mine was blocked 99%. I shall keep you informed to how it goes. You take care

[seeking-answers in reply to Kimberly07]

Hi there. How are your shots going ? I started and now on shot 3. Seen a couple of side effects and would be curious if you have seen anything at all. Going to stick with shot 4 and then scheduled for bloodwork. Side effects are medium and livable- so waiting it out….

R.