Is anyone using Repatha?

Type 1 and LADA
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There’s usually an announcement near the beginning about how to skip over their long elaborate introductions, talking about what they’ve been doing, what they’re reading etc…I usually just fast forward right away to minute 15 to get right to the heart of the matter.

If this is the case, if I were you, I’d definitely want to research if such conditions are reversible before ruling in or ruling out the drug. Often, you can find that information on the drug insert, available (I’m sure) online in a PDF - ie, the fine tiny print. I’ve watched at least one patient testimonial on repatha on youtube.

Well, not sure how long it will be before I have to confront such a decision or if I will, I just mean that it must be tortuous to be in that in-between place. I’ve actually never given Repatha, and today was the first time I’ve given ezetimibe (Zetia) to a patient. I see that it’s been shown to reduce LP(a).

At this point, the cholesterol wars have muddled the waters so much (for me) - it all appears to be overly complicated and almost beside the point to me, like we’re just playing at the edges. At the same time, I am reluctant to acknowledge even that, because the standard of care is to take it if your cholesterol is above X. All of which is to say, I don’t know. I have my feelings, my suspicions, but I’m in no position either professionally or more important, personally, to really weigh in.

I will say, I have friends in their 70s who scoff and laugh at their doctors who tell them to take a statin. My parents (both of whom had some form of CV disease) were never prescribed statins or any cholesterol medication. My grandparents assuredly were not.

It happened so quickly that I wonder if they weren’t/aren’t actively monitoring the site for anti-cholesterol medication content, so bent are they in presenting a consistent message. I actually like these folks, and have learned a lot from their podcasts and some of their regular guests. But, they are young. Once I get a little break and have more energy, I’ll probably email the host about my disappointment. But I’m sure they just don’t want to fool around with any debate on the matter.

Well, Marilyn, all the best - and again, I hope you are able to listen to others and get the information you need in order to drive your care how you wish. It is so difficult to know what to do, and I sympathize.

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Hi Marilyn.
You’re doing the right thing in doing your research and being your own health advocate. I would agree that saving only 1 out of 69 from an event is not too good. I think that the thing to keep in mind is what the relative risk is for the individual in question. The statistics for statins are similar. For example, a study might show that the risk of a CVE is reduced by 50%. At first, that might sound like a lot, but then if the average risk of the group is only 2% for a CVE, then the number helped is only 1 out of 100. On the other hand, if a person is in a high risk category, let’s say that they have a 10 year risk of 30%, dropping the risk by 50% puts the person in a category of odds of being helped 15 out of 100.
This study showed Repatha to reduced endpoints from 27% to 21% over the course of 2.2 years.
https://www.repathahcp.com/outcomes-clinical-trial/data/
That is a pretty substantial reduction in risk over a short period of time. The benefit was growing the longer the study went, and it very well could have been much more than that over the course of several more years. Of course, there is not long term data on Repatha, so we don’t have that yet.
Since, like me, you have CHD, and also you are type 1, you are in a higher risk category, which is why I expect that they want to tread your LDL aggressively, and being higher risk it also makes you more likely to benefit from treatment. From what I have read, the risk profile seems better for PCSK9-I than for statins. The vast majority of side effects are mild and have to do with irritation at the injection site. A couple things to consider: 1) these are minor side effects that I would expect to go away in a few days, compared to the events that are being prevented, it seems like a pretty good trade off to me. 2) There is a new similar drug that finished Phase III trials last September called Iclisiran. It is similar to PCSK9-I, in that it targets PCSK9 production. The Phase III trials went very well and I am told that this will be approved by the FDA within 2 months. One big advantage over PCSK9-I is that it only requires injection twice per year instead of twice per month. This could be a game changer for a lot of people who don’t like frequent injecting. Here is info about it here.

If the injections have you concerned, perhaps it might make sense to hold off for Inclisiran?

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I have been on Repatha for over 2years with no side effects. I had terrible muscle pain and tendonitis from statins and Zedia. They put me on a low dose statin (10mg) for a while, but even that caused side effects. I tried different dosing regimens of low dose lipitor, but to no avail.

Repath really lowered my values, and no side effects. In my case the risk benefit ratio favors taking the drug. It has not raised my BG at all. There are people who have a mutation in PSK9 and have no heart disease in the family members with the mutation. They also have long life spans. And, if you are over 65 Amgen, the manufacturer, has a coupon you give to the pharmacy that reduces the co-pay to $5.

Mike

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If I didn’t have 2 stents from 2010, I wouldn’t consider taking Repatha. I hadn’t realized until recently that because I am a type 1 with two stents that I might not live through getting more stents. The cardiologists might say that to any one who has had diabetes for a great many years, I don’t know.

Cardiologists also aren’t used to seeing people with diabetes who don’t have any other diabetic complications. Also I didn’t have a heart attack, but the stents,my 114 LDL,and my diabetes seem to define me.

I am bothered about being used as a guinea pig with these new medicines. We don’t know how folks will do in the long run. I watched a doctor from Mayo who is very concerned about that, but he does think Repatha looks promising.

I wouldn’t want to take the twice a year injectable because if I did get bad side effects it would take even longer for the drug to leave my body and allow my body to heal. I am still dealing with side effects from the last statin I tried and I quit taking it about 6 months ago.

The nurse at the cardiologist told me not to look at the side effects listed for Repatha, but I have to because I had such trouble from statins and Zetia. I know though that if I had ever looked at side effects for insulin I wouldn’t have wanted to use it. Luckily I had no choice.

I will read more about the statistics and delve deeper into the most recent study.

Thanks for your thoughts Chuck2 I really appreciate what you have to share.

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Thanks Mike. Your experience with Repatha is encouraging. I am pleased that you are doing well.

Marilyn

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I took my first shot of Repatha today. After reading and listening to everything I could and talking with several doctors, I decided to take it after being on the fence for months.

Since I live in the woods, we went to the hospital and I sat in the parking lot to give the shot. I wanted to make sure I could get help if I reacted badly to the first shot.

All is well.

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Absolutely no side effects from Repatha until the 3rd day after taking it. For 3 days I have had hip pain which travels to my back. I have been reading reviews of Repatha today and several people mentioned pain just like I am having. For some people it got worse. Other people had a wide range of much worse problems. Sometimes the side effects don’t show up for several months.

I called Amgen, the makers of Repatha, and asked them several questions. They know that some people have back pain with this drug, so you would think that they could answer some simple questions. I assume they don’t for legal reasons. They were of no help whatsoever.

They said that they would talk to my doctor. I have a call into him too. I will tell him that I am not going to take another injection. In 6 days it took my LDL down from 116 to 76 and I assume it would have taken it down a lot lower. I would have continued to take it but not if it is going to make me feel lousy.

So I will keep continuing to look for alternative means to reduce my LDL.

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Bummer! I was ever so hopeful for you!

Here’s hoping you do find an alternative means :slight_smile:

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Hi Marilyn.
Just circling back to you on Repatha. I started yesterday, with my first injection. So far, so good. No side effects at all. Hardly felt it at all. It was less painful than when I prick my finger to check my BG, which is to say that I hardly felt it. No irritation at the injection site as well. I’ll keep you posted on how it goes. Did you decide whether to move forward with Repatha?

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Hi Chuck, I thought that the Repatha injection was painless, and I had no side effects at all for 3 days. Then my left hip started hurting and this pain travelled around to my back. I felt it the most when getting out of a chair and then walking.

Over the next week the pain would come and go. It also hurt to touch my left hip bone. A few days after that I lost feeling in the tip of my left thumb and then the tip of my left forefinger. That was unsettling. These were all new afflictions.

I called Amgen to try to find out if the hip/back pain would go away. They were of absolutely no help. I called my cardiologist twice and he hasn’t returned my call. I talked to the pharmacist from Arden yesterday. He said that some folks do have the hip and back pain because of Repatha, but that is about all he could tell me. He suggested that I try Praulent.

I read quite a bit about Repatha when trying to decided whether to try it. It was very disconcerting. I recently read the 2018 Lancet Medical Journal articles and what was said wasn’t encouraging.

Also when reading more about side effects, some folks have had horrible side effects which often dont appear for 3 or 4 months. The side effects don’t immediately disappear once the medicine is discontinued.

I think until the Coronavirus is contained, I am going to not take a PCSK9. I don’t want a side effect putting me in the hospital.

I am still bothered by the fact that the death rates were higher for people taking Repatha than a placebo in the Fourier study.

I hope all goes well for you Chuck. I may give it another try later on in the year.

Please keep us posted.

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Marilyn6
I too have hip (not really the hip, but the glutes - and while walking and standing up) and back pain, but not related to Repatha. It is due to spinal stenosis caused by arthritis of the lumbar spine. And the same in the cervical region. The symptoms you are describing should be checked out by an ortho specialist. There are some stretches that may help too.
Mike

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Thanks Mike, but what I had is exactly what happens to some people taking Repatha. The pharmacist who sends me Repatha told me that about 10% of people taking Repatha develop this pain.

He suggested that I quit taking it, so I did. The pain is almost entirely gone now. I do not want to try taking anything else at this time.
Instead I am upping my exercise and trying to lose 5 lbs to see if I can bring down my LDL to about 100. That will take my weight down to 100 lbs, but I am only 5’1”.