PCSK9-inhibitor

[sylvc54]

Hi can anybody give me any information about this new treatment that apparently has been agreed by NICE which involves an injection every two weeks?

I would be grateful for any information, opinion or advice.

[sylvc54]

Thank you for this article. I find the whole issue of high cholesterol very confusing. I am unable to take statins because of side effects. I have a family history of high cholesterol and heart problems on both sides of family. My cholesterol level is 10 and my ratio 7. I live in uk and consultant has said I will qualify for this new treatment as I meet all criteria set out by NICE.

I have asked for tests to determine my individual risks but have been told that in the uk there is not one available.

I am 63 not overweight go to the gym regularly. Go brisk walking regularly eat a very healthy diet and my blood pressure and resting heart rate are low.

I am considering not pursuing any cholesterol lowering treatments but worry that I may be a heart attack waiting to happen.

[Nannyval in reply to sylvc54]

Hi sylvc54dont take them like you I read up Nice get paid buy 5 company to push this rubbiish. Like you I'm on one rosustatin and2 Ezebi a week Daily mail wrote a report on it I can manage low doses only it's come down To 5- 7 from 11 20 odd years ago I'm 79 x

[vanGaal]

Was part of the clinical trials & had to stop due to side-effects (flu like symptoms a few days after every injection). Consultant asked me to try again in September with the approved drug. Lasted a few months then stopped again. This time it was awful muscle pains/aches. Has taken 5 months for me to feel myself again.

Recently sent for CT scan to check arteries and results were "very reassuring with no sign of any build-up".

I've been trying every Statin & now these new drugs since I was 18 (now 46), last TC was 11 (which has rocketed since 2013 when it was around 8 but I was running marathons). Now I'm struggling to jog and/or workout due to fatigue.

Wish I'd never taken the blood test in the first place. Confident that the meds have had a HUGE & negative effect on my life. If I'd had the CT scan years ago then if never have vowed to the pressure to treat the high levels.

Have meeting with my consultant later today.......this should be 'fun', lol.

[sandybrown in reply to vanGaal]

Thank you for writing your experience, every one can learn from this rather than reading many research document on Internet. Was the CT san on the NHS?

Please give us an update after your meeting with your consultant.

[sandybrown in reply to vanGaal]

My experience with statin, after 3 weeks the total cholesterol came down to 2.8!!

Gave up due to side effect, just to make sure there are no problems with the heart I had electro cardiogram and echo cardio gram, all came clear. GP is monitoring my cholesterol levels.

[Mascha1900]

I'm not an expert so I'm not sure, but I think this is actually the same as a statin, with the same side effects as a statin. The only difference is probably that you get it by injection rather than taking it as a pill. Before trying this I would definitely check it out! I'm sure you can find the information you need on the internet, or in the link given below by Londinium.

[vanGaal in reply to Mascha1900]

From what I know they aren't the same as statins. Statins block the production of cholesterol....PCSK9's increase the amount of cholesterol entering the liver and so lowers the level of cholesterol in the blood (according to the literature anyway)

[Nannyval in reply to vanGaal]

And they are dangerous read Daily Mail Article on them x

[sandybrown in reply to Nannyval]

More information from Heart UK.

heartuk.org.uk/healthcare-p...

[vanGaal]

So, little update following appointment with consultant.......the PCSK9 drug I was on reduced my levels by 1 point (from 11.9) but I stopped after about 3 months due to the side effects. Consultant has taken blood tests for genetic testing to see if there is a reason why the PCSK9 drug had so little impact. I mentioned the thyroid tests but he confirmed that these were done at the start of the year and as the TSH level was 'within range' then there was no reason to check FT3. Will see what comes back after the genetic testing as it would be interesting to know why these drugs didn't work for me (maybe I'm just the odd-ball, lol). Only other suggestion on the cards right now is to try red yeast rice supplements!

[sandybrown in reply to vanGaal]

Thank you for the update, please read the side effect on red yeast.

[sylvc54]

Hi

The only figures I have are that my total cholesterol level is 10 and the ratio above 7. Which the consultant told me should be at least below 5.

He has given me a form to take to my own doctor for thyroid tests which I am booked in for in a couple of weeks then back to consultant in June.

He has today sent through a pack with the information about this treatment which I haven't yet sat down to read. He did assure me that there are no known side effects from this treatment but clearly from other responses this is not so.

I had terrible side effects from various statins and my quality of life was seriously affected by muscle problems so I'm very wary of taking any further medication.

I have asked for a test to see if arteries ok but told can't have one. But it seems from Van Gaals post there is a test available so will ask again at next consultation.

I am a great believer in self help, healthy lifestyle, exercise etc but my family history re heart problems is a bit concerning. My dad had a heart attack before 60 as did some of his brothers. And on my mums side her sister died of heart attack early 60s and her brother at 37. I accept that this was a different generation and all that went with the diet and lifestyle of that time but as my high cholesterol is family related I do worry and although I value all the excellent information given to me on this site I still feel torn.

[sandybrown in reply to sylvc54]

Thank you for the update.

[sandybrown]

From the Internet

How statin work:

How they work

Statins work by blocking a substance called HMG-CoA reductase. This is a compound your liver needs to make cholesterol. Blocking this substance reduces the amount of cholesterol your liver makes. Statins also work by helping your body reabsorb any cholesterol that has gathered on the walls of your blood vessels.

How PCSK9 work:

How they work

PCSK9 inhibitors can be used in addition to or instead of statins. These drugs work differently. PCSK9 inhibitors target a protein in the liver called proprotein convertase subtilisin kexin 9, or PCSK9. By reducing the amount of PCSK9 in your body, PCSK9 inhibitors allow your body to remove cholesterol more efficiently.

With all medication we need to understand how they work!

Did not want to retype did a copy and paste.

[sylvc54]

Hi Bala

Thanks for this information.

I will sit down this evening and read the pack sent out by consultant too

[vanGaal]

In response to earlier posts:

The CT scan I had was done on the NHS. Only gripe I have is that I should have had it done years ago. I was labeled 'high risk' purely on my numbers, even when I was much younger with levels around 8.

Sylvan54, I feel your frustration & our stories are similar. Not knowing whether to be worried & knowing how side-effects can dominate every aspect of your life is hard.

My tendency now is to 'live my life' and stay away from the meds BUT at the back of my mind there still is the 'what if they're right' thoughts & with one of my boys having the same genetic profile, then what options lie before him in the years ahead????

[mattybozy72 in reply to vanGaal]

Exactly my thoughts vangaal, I've yet to have my boys tested and very apprehensive about getting them tested

[Tibblington]

Hello sylvc54. I can't comment or advise on this inhibitor but as the result of reading a very interesting book, I have compiled this brief précis which I hope will increase the understanding of the cholesterol/heart problem and to demonstrate that some of the medical profession still don't have an understanding but are guided by propaganda distributed by the pharmaceutical industry.

There follows a précis of only a small part of a chapter in this book entitled “Gut” written by a German doctor, Giulia Enders.

Definition of cholesterol: It comes from the Greek words “chole” = bile and “stereos” = solid. It was first discovered in gallstones. (This was mentioned by a surgeon when he gave a talk to the public that I attended)

The body produces between 75% and 90% of its own cholesterol. It is needed for sex hormones, vitamin D and a plethora of unstable cells. There has been shown a connection between low cholesterol level and memory problems, depression and aggressive behaviour.

The level is ideally controlled by various bacteria in the gut, some encourage the production others suppress it.

The connection between bacteria and cholesterol was first discovered in the 1970s. Studies on Maasai warriors in Africa discovered that the cholesterol levels in their blood were low despite a diet consisting almost entirely of meat and milk. The excessive amount of animal fat in their diet did not cause high blood-lipid levels. A mysterious ingredient in the milk was suspected of controlling the cholesterol levels however experiments on milk from, cows, camels and even rats found nothing.

In another experiment the Maasai warriors were given a vegetable based milk replacement product (Coffee Mate) with high levels of cholesterol added to it. Their cholesterol levels did not change. The bacteria inhabiting their gut from previously digested food had accommodated the excess and dealt with it.

The results of these experiments carried out on only a small number of subjects were confirmed later when further work was done relating cholesterol levels with gut bacteria.

A bit technical but perhaps it aids an understanding that it is probably better and safer to get the gut flora right through food. Bear in mind that they can be killed by antibiotics. Tibbly

[mattybozy72]

Interesting reading , I have a lot of issues with statins and my consultant has offered me these injections, very wary of them as at least with pills you can stop taking them straight away. I'm 44 and have FH current tc 7.7 which I think isnt too bad as it's come down from 9 with running and better diet (but still not amazing ) and no statins.

I'm a little bit in the 'great cholesterol con' camp but it's a tough one and don't know really what to do for the best , there are a lot of horror stories about statins but is that all that comes up on searches ? And are there a lot of success stories and lives saved ?

[sandybrown]

Man made medication can help some people but not every one. When satin came to the market Heart UK was set up help with statin medication and a lot of people benefited out of it but the technology was not there for every one to do own research, Heart UK still going very strong.

[Nannyval]

Hi sylvc54 don't take them they not been tested long enough there was a big write up. In the daily mail re them and NICE get paid by drug company to feed them to us

It all about money .

[Nannyval]

Don't take it it's dangerous Daily Mail article done a full page spread on how bad it was and NiCE promote it and get paid thousand it's all about money the PKS what ever it's called is leathal and causes cancer I was told about it's injection ... No way am I having it x

[Nannyval]

Yes it's dangerous