Cholesterol

Help Support ValveReplacement.org:

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
8,146
Location
Queensland, OzTrayLeeYa
Hi
cldlhd;n873028 said:
... A one time injection vs a daily statin for life? The drug companies won't like that.
when I was doing my Biochem degree this was the goal for us (or most of my colleagues). However pharma has had a go at things (its the old money after all) and stood in the way for about a generation now. I feel we're at the point where drugs are showing diminishing returns for "new development" VS "benefits" over older drugs and that genetic stuff is just starting to come of age. Back in my daze sequencing a genome was "holy grail" stuff ... now most decent labs have the gear.

But I guess its just like the "energy" business ... if you're still only invested in coal / oil / gas you may not like the solar stuff that's happening

I've been "home experimenting" on myself with some of the analgesic properties of optogenetics (happen to have some decent lasers around) and for a couple of injuries (joint of big toe) its doing quite well ... I can't be sure its not placebo ... but hey
 

Paleowoman

VR.org Supporter
VR.org Supporter
Joined
Jun 14, 2010
Messages
2,829
Location
Surrey, UK
cldlhd;n873028 said:
So I could end up like Wolverine? A one time injection vs a daily statin for life? The drug companies won't like that.
I think you will have to watch this space for a long time coming ! They’re going to have to do some very long term studies before knowing if this is safe. Look at this Medscape link to low LDL cholesterol genetic disorders: http://emedicine.medscape.com/article/121975-overview Doubtless there may be more than two genetic variants that cause low LDL and maybe the others do not cause the damage that these do - they lower the risk of heart disease but cause other problems. Low Density Lipoproteins (LDL) carry not only cholesterol out to the cells of the body for repair but also the fat soluble vitamins such as D, E, A, K : https://www.verywell.com/low-cholesterol-level-disorder-697856
 

cldlhd

Well-known member
Joined
Apr 9, 2014
Messages
1,329
Location
Levittown ,Pa 19054
Paleowoman;n873041 said:
I think you will have to watch this space for a long time coming ! They’re going to have to do some very long term studies before knowing if this is safe. Look at this Medscape link to low LDL cholesterol genetic disorders: http://emedicine.medscape.com/article/121975-overview Doubtless there may be more than two genetic variants that cause low LDL and maybe the others do not cause the damage that these do - they lower the risk of heart disease but cause other problems. Low Density Lipoproteins (LDL) carry not only cholesterol out to the cells of the body for repair but also the fat soluble vitamins such as D, E, A, K : https://www.verywell.com/low-cholesterol-level-disorder-697856
I figured there would have to be a downside.
 

Nocturne

Well-known member
Joined
Feb 29, 2016
Messages
485
Location
Rhode Island
cldlhd;n873028 said:
So I could end up like Wolverine? A one time injection vs a daily statin for life? The drug companies won't like that.
As my friend with Type 1 diabetes says, "New treatments, they like. Cures... Not so much."
 

Agian

Well-known member
Joined
Jun 10, 2013
Messages
2,343
Location
Adelaide, South Australia
cldlhd;n873045 said:
I figured there would have to be a downside.
Kids with abetalipoproteinemia (none) don't do very well, at all (homozygotes). People with hypobetalipoproteinemia tend to live about 10-15 years longer than most, all other things being equal.
Having low blood pressure is good. Having no blood pressure is bad LOL
An injection to alter your DNA (foreva)? Yikes!

There it is: "heterozygotes are usually asymptomatic, they exhibit decreased LDL cholesterol and apoB levels and possibly have a decreased risk of atherosclerosis.[SUP]" [/SUP]


Also note: "The nonfamilial forms of hypobetalipoproteinemia are secondary to a number of clinical states, such as occult malignancy, malnutrition, and chronic liver disease." So, this is the point I previously made about old, frail people having low cholesterol, secondary to illness (as opposed to the low cholesterol causing the illness).
 

Agian

Well-known member
Joined
Jun 10, 2013
Messages
2,343
Location
Adelaide, South Australia
Nocturne;n873055 said:
As my friend with Type 1 diabetes says, "New treatments, they like. Cures... Not so much."
I should have said this earlier. I am sincerely happy for you that you have found someone who knows her ****. You can afford to be optimistic. Has she talked about evolocumab? What are your numbers? If you need any help with this stuff, let me know. I took charge of my own health, spoke to numerous experts and read lots. Kind of what Pel did with Warfarin. No happy rainbows involved.

Check out the FOURIER study:
http://www.prnewswire.com/news-relea...300401508.html
 

Nocturne

Well-known member
Joined
Feb 29, 2016
Messages
485
Location
Rhode Island
Agian;n873058 said:
I should have said this earlier. I am sincerely happy for you that you have found someone who knows her ****. You can afford to be optimistic. Has she talked about evolocumab? What are your numbers? If you need any help with this stuff, let me know. I took charge of my own health, spoke to numerous experts and read lots. Kind of what Pel did with Warfarin. No happy rainbows involved.

Check out the FOURIER study:
http://www.prnewswire.com/news-relea...300401508.html
Thanks, Agian. Interesting article but it does not seem to reveal the numbers -- HOW MUCH did this drug help?

My new doc was aware of "new therapies being developed", but did not seem to recognize cyclodextrin. It is possible that she was talking about evolocumab. I did not ask her to explain further; honestly I was ecstatic that she wanted to get my Apo-B and LDL-P levels checked, which other docs had blown off as "unnecessary".
 

Paleowoman

VR.org Supporter
VR.org Supporter
Joined
Jun 14, 2010
Messages
2,829
Location
Surrey, UK
The Fourier study is about Repatha which is Evolocumab which is a PCSK-9 inhibitor. It lowers LDL substantially from what I've read, here's an FDA snapshot report from a couple of years ago: http://www.fda.gov/Drugs/Information.../ucm472319.htm but, as it says in the Fourier study: "The effect of Repatha[SUP]®[/SUP] on cardiovascular morbidity and mortality has not been determined."
 

Agian

Well-known member
Joined
Jun 10, 2013
Messages
2,343
Location
Adelaide, South Australia
Nocturne;n873076 said:
Thanks, Agian. Interesting article but it does not seem to reveal the numbers -- HOW MUCH did this drug help?

My new doc was aware of "new therapies being developed", but did not seem to recognize cyclodextrin. It is possible that she was talking about evolocumab. I did not ask her to explain further; honestly I was ecstatic that she wanted to get my Apo-B and LDL-P levels checked, which other docs had blown off as "unnecessary".
I'll get back to you mate. I'll upload another article when I get back from work.
 

Paleowoman

VR.org Supporter
VR.org Supporter
Joined
Jun 14, 2010
Messages
2,829
Location
Surrey, UK
Agian;n873087 said:
Yes, that was two years ago. It NOW has FDA approval. Back then it was a new drug, as yet unproven. Now it's not. Simples.
The data from the FDA snapshot I posted which shows the big levels that Repatha lowers LDLwas posted from two years ago, but the sentence I quoted: "The effect of Repatha[SUP]®[/SUP] on cardiovascular morbidity and mortality has not been determined." I coped from the FOURIER study which you posted above which is dated 6th February 2017, scroll down to the section Important US Product Information in that study which you posted:
http://www.prnewswire.com/news-rele...ents-in-fourier-outcomes-study-300401508.html

(Aglan - with great respect, please, please read my posts carefully, I'm afraid this is not the first time you have misinterpreted what I have said or quoted. Please read the full details of the study which you posted yourself, read it all and you'll see that sentence "The effect of Repatha[SUP]®[/SUP] on cardiovascular morbidity and mortality has not been determined." - it's about a third of the way down the page in the important product information for US section)
 

Agian

Well-known member
Joined
Jun 10, 2013
Messages
2,343
Location
Adelaide, South Australia
Paleowoman;n873105 said:
The data from the FDA snapshot I posted which shows the big levels that Repatha lowers LDLwas posted from two years ago, but the sentence I quoted: "The effect of Repatha[SUP]®[/SUP] on cardiovascular morbidity and mortality has not been determined." I coped from the FOURIER study which you posted above which is dated 6th February 2017, scroll down to the section Important US Product Information in that study which you posted:
http://www.prnewswire.com/news-relea...300401508.html

(Aglan - with great respect, please, please read my posts carefully, I'm afraid this is not the first time you have misinterpreted what I have said or quoted. Please read the full details of the study which you posted yourself, read it all and you'll see that sentence "The effect of Repatha[SUP]®[/SUP] on cardiovascular morbidity and mortality has not been determined." - it's about a third of the way down the page in the important product information for US section)
It's only just hit the market, so it will take years to determine its long term benefits.

But really, I'm not interested in continuing this with you. It's a waste of both our times.
 

Agian

Well-known member
Joined
Jun 10, 2013
Messages
2,343
Location
Adelaide, South Australia
Nocturne;n873076 said:
Thanks, Agian. Interesting article but it does not seem to reveal the numbers -- HOW MUCH did this drug help?

My new doc was aware of "new therapies being developed", but did not seem to recognize cyclodextrin. It is possible that she was talking about evolocumab. I did not ask her to explain further; honestly I was ecstatic that she wanted to get my Apo-B and LDL-P levels checked, which other docs had blown off as "unnecessary".
Theoretically, soft plaque is reversible (As long as you can get your LDL low enough <1.8, and there are no other unaddressed risk factors); but calcification is not. You will never get pristine arteries and your CAC score will not improve. They use CAC score as a guide to plaque burden.

They have actually monitored plaque regression using Intravascular Ultrasound (IVUS), but can also monitor the intimal thickness of your carotid arteries.

https://oup.silverchair-cdn.com/oup/...CZBIA4LVPAVW3Q


Here are the Gould Guidelines. He uses PET scanning to demonstrate reversal (this is way before evolocumab)
http://www.uth.tmc.edu/pet/Assets/pd...guidelines.pdf

Here's some more blurb:
http://www.accessdata.fda.gov/drugsa...522s000lbl.pdf

I would have uploaded a talk, but you won't be able to view without an account.
 

CAWwindy1

Member
Joined
Jun 17, 2013
Messages
15
Location
Canada
I am currently taking Rapatha ( injection every 2 weeks ) to lower my high cholesterol. I have been on it for two years now and have had no side effects except occasional sinus mucus buildup on the day of injection.My cholesterol has dropped from around 12 to under 3 and I seem to maintain that level with no other diet or medication intervention.It is expensive ( about $1000.00 / month ) but it is fully covered by my medical plan in Canada. You have to have tried everything else to lower your cholesterol and be genetically inclined to very high cholesterol before they allow you to get on this program.
 

newarrior

I have mild moderate Aortic Stenosis live Bangkok
VR.org Supporter
Joined
Jun 29, 2019
Messages
437
Location
Bangkok Thailand
My CAC score was 680 in 2013; I got my LDL down to 51 using diet, exercise, and 40 mg of lipitor for what it's worth/. TG is 64 and TC is 94.
 

slipkid

Well-known member
Joined
Jun 12, 2014
Messages
213
Location
Schwenksville, PA, USA
I am currently taking Rapatha ( injection every 2 weeks ) to lower my high cholesterol. I have been on it for two years now and have had no side effects except occasional sinus mucus buildup on the day of injection.My cholesterol has dropped from around 12 to under 3 and I seem to maintain that level with no other diet or medication intervention.It is expensive ( about $1000.00 / month ) but it is fully covered by my medical plan in Canada. You have to have tried everything else to lower your cholesterol and be genetically inclined to very high cholesterol before they allow you to get on this program.
Thx for your comment (& this thread). Nice to hear a positive result from this drug amongst a bunch of bad stuff I have been hearing.

I posted a year or so asking if anyone up here has had experiences with Repatha or Praluent (both PCSK9 inhibitors) but got no responses.

My doctors (one especially) are pushing HARD on Repatha for me, my PCP is relentless in fact (emailing me like every month telling me how great and how it is has "zero" side effects) despite my expressing my reservations about it but he refuses to even discuss any of the negative reports about it with me - which of course does nothing other than to persuade me to avoid it rather than convince me to take it.

Some of the negative things I have read about concern adverse effects which I am simply not willing to risk are talked about here:




I had multiple issues on statins, both muscular & nervous-system (those were the worst) until my PCP took me off that. I then saw a lipid specialist who as part of his workup had me see a "genetic counselor", who through a dna-test/study said that I have some sort of genetic mutation common to people who have trouble on statins (?). The lipid Dr. then recommended course of action was for me to go on a PCSK9 inhibitor, recommending Repatha over Praluent for some unknown reason (my PCP was pushing Praluent at that time). I posed the question to the lipd specialist that couldn't my problems on the statins be related to just the lowering of my LDL in general as opposed to some other adverse effect /mechanism of the statin but he said no (long story). I am now tending to believe that may not be the case and my body just needs higher LDL to work right (despite the bad effects on my arteries).

Something like this maybe:



My conclusion from all this was that I would rather die naturally than go through what some people who have taken this drug have gone through, all for the sake of lowering my cholesterol which even the drug company studies/etc has admitted that despite lowering cholesterol very effectively the end result is that only 1 in 66 people get a reduction in heart attacks/strokes and there is no benefit as opposed to # of deaths amongst those studied (I 4get the exact details, wait here is an article on that).



I had also read an interesting medical account about a man in his 70s who had to go to the ER after being on Repatha for over a year, I 4get what the exact problem was, am hazily thinking it was something wrong with his red blood cells (?) which the Drs were able to determine was caused by Repatha. I can't find where that article was....still looking now but cannot find it...

Anyways, anyone who has comments or experiences with PCSK9 inhibitors like Repatha, both good and bad, please post here or in my thread:

 

newarrior

I have mild moderate Aortic Stenosis live Bangkok
VR.org Supporter
Joined
Jun 29, 2019
Messages
437
Location
Bangkok Thailand
I've not been on the truck but I'm trying to get it here in Thailand and hearing the same thing from doctors here they're worried about the side effects but my reasons for taking it are different than yours. I'm trying to lower my lipoprotein as I'm still pre-surgery and I believe that the lower I get on my lipoprotein the more I can slow down my heart and heart valve disease. I stop statins no problem and I've got a super low LDL of 51 due to my statins in my vegan diet
 
Top