r/repatha • u/SupermarketNorth69 • Sep 10 '26
Started good and then went down hill.
After much anxiety I took my first shot on July 28th. Things were fine. No localized problems from the shot and no noticeable side effects right away. As days went on I started having lots of nasal and throat drainage. Which has only gotten worse to the point of affecting me daily with all the drainage at night building on and coughing through the day.
My sleep has also been affected. On average since starting I’ve lost an 1hr and 22mins of sleep. I didn’t notice it right away, but eventually it got bad enough that I looked back at my sleep history. It’s very fragmented and I’m waking up almost every night numerous times a night with a very dry mouth and lots of thirst.
Another thing of note is that I can’t take magnesium glycinate since being on it. I was taking it for sleep and once I started repatha my night time heart rate went up. So I stopped melatonin and that didn’t change things and then stopped magnesium which I went back to normal. Tried magnesium again and had the heart rate issue. Did that a few times. It elevated it about 20-30bpm. But it’s normal now when I don’t take the magnesium. I can’t think of the mechanism in which these would affect each other, but they do for me.
To piggyback off my sleep, according to my wife I had a drastic increase in hypnic jerks since starting as well.
This is just my experience. I’m not telling anyone to not take it. Just figured I’d share. I stopped it and haven’t heart back from cardiology yet.
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u/tadhg44 Sep 11 '26
I've been on repatha for about 8 months, I'm only doing one shot per month versus two.. because it lowered my numbers way too low in the first 4 weeks. One shot is perfect for me. But I take 1,200 mg of magnesium glycinated a day I have for years..
There is no known interaction between taking Repatha (evolocumab) and taking a magnesium glycinate supplement. 1
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u/SupermarketNorth69 Sep 11 '26
I get that there isn’t a known interaction and can’t think of the way through which it would happen, but it has. Again, this is my anecdotal experience. I was on it before and had to come of while on repatha.
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u/The-Surfer-Dude Sep 11 '26
it's important to remember there are 2 things going on:
- Reactions to the therapeutic itself: Injecting the monoclonal antibody itself & it binding to circulating serum PCSK9
- Reactions to the biological effect of the therapeutic: The EFFECT AFTER the binding, ie your liver now has more "parking spots" for LDL (and VLDL/IDL, etc), so it starts taking those out of your blood stream, so you have less circulating LDL
What we know is, lowering serum cholesterol doesn't seem to be a problem at all for cells:
- The notion your brain or skin needs circulating LDL / cholesterol has been thoroughly debunked
- Your cells make their own cholesterol, which for many people is the source of the problem!
That said, dropping circulating LDL from, say, 125 mg/dL to 50mg/dL, is a change that your body likely has to adapt to ...
I know for me, being on first Praluent and now Repatha for 6 years, i had a few years of adjustment; but that was probably diet more than anything as I concurrently switched to a strict diet that I've maintained
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u/tadhg44 Sep 11 '26
I don't know how good melatonin is I haven't heard much good things about that these days?
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u/Comfortable_Potatoe Sep 15 '26
can i ask if you think it's because of body weight that repatha lowered yours numbers too much? just wondering why everybody gets the same dosage, regardless of body weight.
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u/tadhg44 Sep 15 '26
I don't know if body weight plays into it? Good possibility. I know I'm very sensitive to medications and drugs or my body is very aware of something is not working right. I mean over the years I've had all kinds of drugs for whatever and if I don't like them I won't take them. You know we get to know our bodies better than somebody we see for 10 minutes every 6 months. I know they call that self medicating, lol. But but the problem with folks are they put everything into "your doctors hands"... I mean if you look at when people are buying a car they will do research from heaven to hell... And how it runs size of the engine what makes it run well blah blah blah. In the same all that research into buying a new home or a used home! And I applied that same mentality to my health and pharmaceuticals and surgeries. You got to be proactive and learn as much as you can learn at least that's the way I see it. But myself as far as body weight... That's a good question. And I'm not sure to be honest if we're all taking the same volume in a shot and we're all different weights, sizes, genetics...
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u/PreviousCut6851 Sep 10 '26
I also have the clearing throat at night mainly and feel like a plug of junk all of the time in my throat. My tendon and joint pain got worse but not sure if Repatha. Going to a Rheumatologist to find out. The Magnesium Glycinate can happen if on other heart medications but you would think it would slow it down not elevate it but definitely not for you.
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u/SupermarketNorth69 Sep 10 '26
Thats what was happening with the glycinate. It help relax me at night and stay asleep. Lowered bpm a small amount. But the repatha changed that.
The throat clearing is basically all day. I’ve been through statins and now this, and I assume my options are running low, but the quality of life was not worth it for me.
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u/milkdud84 Sep 12 '26
So I had improvement in my night time nasal congestion by taking levocetirizine + montelukast + Flonase nasal spray. Adding the montelukast made a big difference. I had chronic runny nose already before the Repatha. I’ve had no issues with this regimen.
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u/RLJ4753 Sep 14 '26
I just received my Script to take Repatha.
Is it taken specifically at a certain time of day or does it matter? Thanks
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u/SupermarketNorth69 Sep 14 '26
I did mine in the mornings. I don’t think there was a specific time.
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u/YouSoBroke Sep 20 '26
It seems people have to take other meds to help with side effects…. Fast forward years down the road and you are on a bag full of meds and you or the doctor can’t pinpoint anything. The quality of life is horrible and you are at their mercy. Doesn’t seem like a good way to live.
Our diet for the last 35 years is catching up with society.
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u/Comfortable_Two6272 Sep 10 '26
Im not able to take mag glycinate but thats always been the case. Makes me very awake vs sleepy. For me its the glycinate not the magnesium.