statin study: hello everyone, is there... - Cholesterol Support

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statin study

sindy profile image
10 Replies

hello everyone,

is there anyone out there involved in a study conducted by SYNEXUS.

clinical research centre for statins? it is a new drug called bococizumab (pf-04950615)

i'm due to start it soon and would like to know if anyone is on this and if there is any side-effects.

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sindy profile image
sindy
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10 Replies
Leilanilea profile image
Leilanilea

Hi Sindy,

I have no personal experience with this drug. It is not a statin but a monoclonal antibody. Seems that it has been studied in trials where patients did not take drug alone, but along with a statin. It is given subcutaneously...that is by injection into fatty layer under skin. It's one of a new class of drugs.

Here is good article: cnn.com/2015/08/27/health/f...

Remember that with new drugs, side effects may not appear until they've been on market a for quite a while. Is there a specific reason why you're going to be taking this drug rather than esrablished others? By the way, I'm definitely not touting statins.

Best,

Leilani

ckra1000 profile image
ckra1000

I believe bococizumab is one of the new PCSK9 inhibitors which control lipid levels in a different way to statins. They are extremely powerful and more effective at controlling lipids than statins. I was invited to take part on the global ODYSSEY drug trial for alirocumab, which is similar to bococizumab. They claim to have far fewer side effects than statins. They are normally administered using an automatic-injection which is self administered approx. once per fortnight. I didn't like the idea of injecting myself but during the test injection, I didn't even feel it.

I was not able to join the trial as statins had already taken my lipid profile to below the target level for the PCSK9 inhibitor trial.

In reality, this is not a brand new drug as it has been used to treat children with certain eye disorders for many years, However, given how effective it is on lipids, there is a desire in the medical professions to license it for use in lipid management.

Penel profile image
Penel

There are possible side effects for any drug, I think.

pharmaceutical-journal.com/...

If you're on a trial, it may well be a double-blind trial where neither you nor the trial people will know if you're getting a placebo or the real thing.

Subcutaneous injections are fine. I do them 3 times a day with insulin and mostly I don't feel anything - it's a very fine, very small needle. If it were into the muscle, as with 'flu jabs or B12 injections - that would hurt quite a bit more!

I am hoping to get onto a PCSK-9 inhibitor myself - my LDL's could do with a 50 to 75% drop!

Everything has the risk of side effects. Drinking a glass of water can have side effects. Getting out of bed. Crossing the road. It's called 'life'.

If the risk of problems from side effects is lower than the risk of not taking the drug, then I prefer the lower risk. I trust my medics to guide me in that decision, but make sure I am informed.

Giving a child an innoculation against Measles or Mumps carries risk. Not giving them that carries a higher risk - but because the parents are having to do nothing, it also carries lower guilt if the child dies from the disease.

Surely if 'Natural Therapy' works, it would be called medicine - the extract of the bark of the willow tree comes to mind.

My cholesterol was at its highest after I'd spent 3 months on a very low fat, high protein vegan diet. I wasn't on that diet to lower cholesterol, but for other reasons.

It is possible to lower cholesterol by a bit by diet, plant stenol/sterol esters, oat bran. I do all of these. But if you happen to have the faulty gene/genes that cause Familial Hyperlipidaemia, then you are also highly likely to need help from Drugs. You try getting your CH from 18.9 down to 5 without drugs.

Now as you are aware, this UK Forum was set up & run by Heart UK. They are a very small UK charity dedicated to researching & helping those with high cholesterol levels, especially those of us with the genetic problem.

I think that it is a crying shame that they are having to close this forum.

Gardengnome1942 profile image
Gardengnome1942 in reply to

What have I missed as the reason that they are having to close this forum? What's gone wrong? Has someone said something too controversial ?

in reply toGardengnome1942

From healthunlocked.com/heartuk/...?

"It is with regret that HEART UK - The Cholesterol Charity are having to remove this forum with immediate effect. We are a small charity and no longer have the resource to effectively manage HealthUnlocked.

It is unfortunate that a small, very vocal minority of HealthUnlocked members have posted misleading, inaccurate and often dangerous comments. HEART UK has a duty of care to patients and it is unfortunate that these posts have become so unmanageable and led to us reaching this difficult decision."

Gardengnome1942 profile image
Gardengnome1942

What I dislike most is how NICE states everyone with a Qrisk of over 10% should take a statin. Why even risk making well people ill with the things when it is nothing but a tick box exercise. Most men over 60 would qualify for one on that basis. I regard it as bullying. I know they only 'offer' the things but with a warning that you should do as you are told!

in reply toGardengnome1942

I think the NICE advice is more controversial, as some people who would only slightly benefit from the use of statins do develop side effects.

However, for those with significantly raised cholesterol that diet will not touch, the risk from statins is outweighed by the benefits.

I am positive that, having developed angina at the age of 29, I would have been dead by now without statins.

My father certainly avoided angiography and angioplasty, as they hadn't been introduced to the UK by when he had his heart attack in the 1980's. If they had been around, they might have been able to open up the arteries to restore blood flow to the heart. Maybe statins would have helped bring his cholesterol down, and just maybe he would be alive now, like his elder brother who didn't inherit his gene. He had 3 other siblings with major cholesterol problems all of whom were dead well before 60. One even happened to run a health-food shop and made full use of his stock.

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