I have been approved by my insurance company to use it, but I am worried about it. If I didn’t get 2 heart stents after 50 yrs of being a type 1, I wouldn’t consider it. My LDL is 117. My HDL and Trigs are excellent. I have had stents for 10 yrs. I eat a low fat plant based diet and am holding my own with that and exercise. My cardiologist thinks that my numbers are very good, but worries since I already have stents. He would like to see my LDL at 70.
My LDL was high when I received stents although my HDL was 100, trigs were around 37 and a1c was 4.6.
I am very familiar with both sides of the argument about cholesterol. I don’t want to do anything that is going to shorten my life, but I don’t want to shorten it by not doing anything.
@Marilyn I hope everything works out for you. I too was recommeded to get my LDL below 70; once there, they wanted it below 50. Even once that happened, they wanted me to take one of the PCSK9s. I never tried one, but that isn’t to say what I will do in the future, as my LDL fluctuates and my doctors say this is normal. I’m not so sure about much of what they say any more though!
I know @Thas has taken the PCSK9s. You can look for his posts or perhaps he will see the call-out and stop by to offer some advice.
Tapestry, do you have heart disease or do doctors want your LDL below 70 just because you have diabetes?
If I had ignored everything I was reading at the time, and taken a statin to lower my LDL would I have saved myself from having stents? I want proof that a cholesterol lowering med would have helped me. I guess, I am coming to the conclusion that not taking a statin didn’t help me, because I do have stents. Whether taking a statin would have saved me from stents, I don’t know.
I will try to find Thas or his posts. Thanks Tapestry.
Well I ordered it and will start it next week. Some of the reviews online are really scary, but after talking to the pharmacist at the specialty pharmacy I feel a bit better about it. The most recent study is supposedly showing that Repatha has decreased strokes and heart attacks by about 25%. How they figure this out I haven’t a clue. Also I have no idea who paid for the study.
If I have side effects I will get off of it immediately. At almost 69 I would like to live into my 80’s but not of I don’t feel well.
I really hate this and just want to ignore my cardiologist’s advice which I have been doing for years.
You could ask your cardiologist if he would do an NMR to look at your LDL particle number. LDL Particle number has shown to be a better predictor of cardiovascular risk than the more commonly tested LDL-C. In the Framingham Offspring Study there were significantly lower cardiovascular disease events rates were associated with lower LDL particle numbers than compared to equally low LDL- c levels. There is also the Multi-Ethnic Study of Atherosclerosis (MESA). It showed that both LDL Particle and LDL-C were associated with future cardiovascular disease but particle number appears to be more predictive than LDL-C. It also showed that LDL-P and LDL-C can be discordant (in other words, you can have a “normal” LDL-C but have a high LDL-P). In the cases where it was discordant, the LDL-P tracked closer with future cardiovascular events than LDL-C.
This test could possibly provide you with a better idea or it could put in more of a quandary. If the LDL Particle number is clearly high, then you may feel more confident that it is the right course. If it is normal, it isn’t as clear cut and it may put you more on the fence.
I have had the NMR done at least 3 times. The best numbers were when I was taking a tiny dose of a statin. Unfortunately the statin caused a side effect eventually. Here are the numbers from the one before that without a statin.
LDL-P 1441 borderline high
Small LDL-P. 311 <527 low
LDL size 21.4 >20.5
My Insulin resistance is lower than the lowest number listed.
Are you on a statin and zedia? I’m currently trying to get approved through my insurance plan as well. I had a heart attack and a stent put in. I get horrible side effects from high dose statins. Repatha sounds like the best case scenario. It helps your body clear ldl. Especially LP-litte a and ldl remnants. These are the ones that are easily oxidized and can end up in your endothial walls.
I can’t take any form of a statin or Zetia because they all cause side effects for me. Even very small doses give me problems.
I hope that your insurance company approves one of the injectable drugs for you soon. I was turned down at first, but my cardiologist argued with them about their decision.
Marylin the single best thing you can do is start reading the medical literature yourself. Asking for anecrodal advice can give you somewhere to start but your not going to find any sort of conclusive or empiric evidence to make sound decisions.
Here is excellent technical information on conducting successful (winning) searches of the medical literature
using online databases of peer reviewed scientific studies from:
Pubmed
EMBASE (Excerpta Medica Database)
Cochrane CENTRAL (The Cochrane Central Register of Controlled Trials)
Edward, thanks for the information. My family and I have been dealing with some horrible medical problems for more than 25 yrs and that doesn’t even include diabetes. I read the studies, read books and articles about the illnesses, talk with professionals and talk with people on line.
I am definitely not medically naive. I find all the research helpful. So far my research has been extremely helpful to my family. I research and then make the decisions which make the most sense to me. So far I have saved my family much grief by deciding which path we should take.
Hi Marilyn,
I will be going on PCSK9-I in a couple of months for blood lipid control, but a little different than your situation. I am prediabetic and have a few other conditions that I am dealing with, one of which is a very high LP(a) level, in the 95th percentile. I was on statins for 15 years, but when I found out I had high LP(a) I went off of them. LP(a) is a form of LDL and it turns out is a very high risk marker for CVD. It is believed that diet and exercise have almost no effect on it, and its level is believed to be completely genetically determined. While statins lower LDL, they actually raise LPA 10% to 20% for most people. Thus, the statins were actually putting me at a higher risk from raising my LPA, despite the fact that they lowered my LDL. I did a lot of research on my own and consulted with one of the top lipidemiologists on LPA and decided to go on PCSK9-I, as it lowers LDL, like statins, but instead of raising LPA, it lowers it by about 20 to 35% and is the only prescription drug that does so. After going off of lipitor, we took a baseline of my lipids. LDL 84, Triglycerides 46, HDL 74, so my whole foods plant based low carb diet of the past 7 months is doing wonders for my standard lipid numbers. My LPA is still more than twice what it should be (29 is the upper limit of normal), but it dropped significantly from 97 to 77 mg/l. The 21% drop is almost certainly due to going off of lipitor. This pretty much confirms that in my case the statin was doing me more harm than good, putting me in an even higher risk category based on my already high LPA level.
PCSK9-I has a very good side effect profile, which is whey I plan to go on it- much better side effect profile than statins it appears. It will also lower my LDL way below the target of 70, although that is not my primary motivation. That will theoretically reduce my CVE risk a few percentage points, but the drop in LPA, assuming I respond normally to it, will probably reduce my risk of CVE by 30 to 50%.
I’m involved in a short term trial right now, but after the trial, in about 6 weeks, I will be going on the PCSK9-I and will be happy to share how I am reacting to it.
Thanks for sharing Chuck2. It is too bad that your LP(a) level wasn’t checked before you went on statins, but I doubt that many people know what their LP(a) level is.
I was thinking that I should have that test done, but since I already have stents, it probably really doesn’t matter.
Please post how you do with the injections and I will post my results too.
Hi Marilyn.
I would recommend getting your LP(a) tested. It is only a $ 25 test at Labcorp and an important risk factor to know. I can’t see how having stints would in any make knowing this info moot. In fact, if high, it could suggest this as a causational agent for previous CVD. Of course, already having stints, you know that you are at risk and are acting accordingly, going on PCSK9-I for example. However, it is still important to learn if you are high in LPA, as there is a new antisense drug entering the third phase trial that knocks the LP(a) level down by 80 to 90%.
20% of the population has high LPA, yet the vast majority of doctors and even cardiologists remain oblivious of LPA as a risk factor. If they do happen to be aware of this, most will not be aware of the fact that statins raise LPA. There is over 20 years of published clinical research on LPA as a risk factor, so there is really no excuse for this. Some are aware of it as a factor, but see no reason to test as there is not much one can do to lower it. However, it is important for all to know for a few reasons: 1) If you have high LPA you may be putting yourself at greater risk by going on statins, despite the lowering of LDL. For you this is a moot point, because you are already going on PCSK9-I, but individuals who have high LPA should be consulting with a cardiologist who is aware that statins raise LPA and the associated risks with this 2) As noted, there is now a prescription drug that lowers LPA significantly, PCSK9-I, and lowers risk accordingly, even though it will not bring most high risk individuals into the normal range. 3) There are LPA lowering drugs on the horizon that look very promising, likely to be approved within a few years, and these should be considered for those who have high LPA and are at risk. 4) If a person does have high LPA and is therefor at risk, it is good to know, as the best defense is to lower all of the other Framingham risk variables to lower overall risk. Of course, someone with diabetes, or prediabetes should already be doing this, as they are already in the higher risk category.
Best of luck with your PCSK9-I treatment. Lets keep in touch on how our numbers react and how we do on it.
Thanks for all of the information Chuck2. I will go ahead and get my LP(a) level checked. The Repatha is being delivered tomorrow, but it it will probably take me a few days to get up the nerve to take it. I live about 20 minutes from a hospital, so I am thinking of giving my first dose in the parking lot at the hospital in case I have an allergic reaction to it.
I have been having a few unrelated to diabetes health problems, which have hit me out of the blue, and I am a bit nervous about throwing anything else into the mix.
I have two Repatha pens in my refrigerator and I am scared silly to use one. On line, I read complaints about some pretty awful side effects and since I am sensitive to meds I am hesitant to try Repatha. The 2017 study showed only 1 out of 69 people were helped and Repatha saved no one from death. To me those are terrible findings.
I wonder if there is a more recent study. I couldn’t find one.
I think I might try another small amount of statin and try to live with more minor side effects.
The Curbsiders is an internal medicine podcast featuring a regular cast of young doctors. One of their most recent episodes is all about lipids, therefore all about statins, and in a very positive way.
I posted a comment that was a bit critical of the lead guest’s point of view, and it was quickly deleted. Mind you, it was only slightly critical and I was very polite. They are taking a very hard line and are brooking no criticism of statins. They feel that the all the criticism of statins’ role in cognitive decline as well as blood sugar and muscle dysfunction are extremely overblown and are doing patients a disservice. So, that’s just by way of background about this podcast.
Ezetimibe and PCSK9 Inhibitors
When thinking of additional medications to add to a statin for further lipid lowering events, think no further than ezetimibe and PCSK9 inhibitors! The IMPROVE-IT, as well as ODYSSEY and FOURIER trials really showed us the added benefits of ezetimibe and PCSK9 inhibitors, respectively. IMPROVE-IT showed that the addition of ezetimibe to moderate-intensity statin reduced cardiovascular mortality, major cardiovascular events overall, and ischemic stroke (Cannon, 2015). Moreover, PCSK9 inhibitors showed benefit when added to high intensity statin in patients with known coronary disease or familial hypercholesterolemia in the ODYSSEY trial (Robinson, 2015). There was a 62% reduction in LDL in these patients with no increase in cardiovascular events, and a post-hoc analysis showed a 2% absolute risk reduction in major cardiovascular events (MACE). The FOURIER trial also showed 1.5% absolute reduction in MACE when added to a high intensity statin with LDL above 70 mg/dL (Sabatine, 2017).
If you go to the Curbsiders link, and then do a control find for Evolocumab (Repatha), you will find another study, specifically about Repatha, that may be of interest to you.
Personally, I would dig deep to see if the impact, particularly the cardio vascular impact is truly meaningful. Yes, PCSK9 inhibitors can lower LDL by a ton, but how meaningful is it? Good luck. I am fortunately in a position to be skeptical of LDL and statins because I do not have to make any choices (yet).
I tried listening to the Curbsiders last night and I had to turn them off because they were irritating me.
They are really full of themselves, or so they seemed to me in my tired state.
Looking at what they posted on their site, I just don’t see much benefit to taking Repatha. Yes, it definitely really brings down LDL, but it doesn’t seem to show that it saves lives. A one in 69 chance of it helping me doesn’t seem worth dealing with the side effects.
I read one report talking about how the drug can increase glucose levels, and another report saying that that isn’t true. One person who complained about the drug said that his glucose level rose to 450. This is the internet so this person could be lying, but he might be telling the truth. I have about as much faith in his account as I do in the accounts of the company who makes it.
I can’t take statins and I can’t take ezetimibe. They all cause neuropathy in my feet. I have never in my 61 yrs of being a type 1 have had any kind of neuropathy and I am not going to let a drug give me this painful condition. The neuropathy caused by the last statin I tried is almost gone now. Other statins raised my liver enzymes or made my muscles sore.
If even only 50% of people were helped by Repatha I probably would at least try it, but 2%? I don’t care if my LDL of 114 is reduced if it isn’t going to help me in the long run. I am going to turn 69 tomorrow and of course I want to live another 15 yrs but I want to feel well for most of that time while doing it.
Of course Repatha might not cause side effects for me, but I have read about people with burning feet and hands etc. It also can cause major back problems and fatigue. I don’t know if I want to chance it especially after the rough few months I have had.
One doctor from Mayo was saying that he thinks it is a good drug for his hard to treat patients but is worried what will be found out about the drug in a few years. It is an extremely new drug.
I am glad Senator, that you won’t have to think about this for a long time.
If you have any more thoughts, I always love to hear what you have to say.
