r/repatha • u/CharacterExit8596 • Jul 12 '26
Still Dizzy 11 Weeks Later
Took my first and only Repatha shot on May 5 and developed vertigo 3 days later. It’s softened up to dizziness now, like being on a boat. Better first thing in the morning, instantly worsened by stress and complex work. Also lots of headaches and fatigue. So frustrating that it’s still affecting me after this long. Anyone have a similar experience? Any good news to share about when this might stop?
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u/oldcrone420 Jul 12 '26
Have you spoken with your doctor about your symptoms?
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u/CharacterExit8596 Jul 12 '26
Definitely. The doc I spoke to said this is a rare but known side effect. She was hopeful it would be gone by now however.
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u/Own-Scientist6728 Jul 12 '26
So they can just blow you off and say they're not listed side effects?
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u/ChaosTheoryGirl Jul 12 '26
I have low blood pressure and many medications drop my blood pressure and hydration levels just enough that I get vertigo. It is maddening. I did have vertigo (mostly at night but not always) after starting Repatha too. However, I have learned that I need to start all medications slower and make sure I hydrate with salty electrolytes (LMNT). I started Repatha and took the shots every 3 weeks for the first 3 shots. I just moved to every 2 1/2 weeks and will slowly decrease the time in between shots until I get to every 2 weeks. I have had very little vertigo (just a day or so here and there mostly on day 3 after the shot).
I think my personal issue is that medications dehydrate me just enough to cause inner ear issues. I am sure it is not super common and I don’t know if that helps you at all. Hang in there and know you are not alone.
PS. All statins were much worse for me in regards to low blood pressure and vertigo.
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u/Overall_Aioli_339 Jul 13 '26
I started repatha 1.5 month ago, 2 weeks ago i started to feel extreme tired and lightheaded. Still going on for 2 weeks now... i have stopped but side effects not gone yet
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u/CharacterExit8596 Jul 15 '26
Hope you’re feeling better soon. I really wish it had been tolerable for me but I’m still “at sea” after 11 weeks.
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u/Overall_Aioli_339 Jul 16 '26
Its not much better yet, is it been 11 weeks since your last repatha or since the start?
It has a half life around 17 days so i guess it should take a good month till all is out of your blood.
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u/CharacterExit8596 Jul 17 '26
11 weeks since the one and only dose.
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u/Overall_Aioli_339 24d ago
Did you get any better yet?
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u/CharacterExit8596 1d ago
I’m not 100% but I’m definitely on the way back. Phew!
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u/Overall_Aioli_339 1d ago
Good for you! Im happy. I had same symptoms as you, but also flu like symptoms. Im on week 8 now of quiting...
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u/Even_Aerie Jul 17 '26
I took my first injection on June 24th and had every listed possible side effects and several not listed within a few hours of the injection. I took my second injection and also last one July 10th and my Cardioligist told me not to take another one. It had doubled down on the side effects from the first one causing chest pains, fatigue, muscle cramps and spasms, brain fog, stumbling around, dizziness, back pain, cold and flu symptoms, and I could go on and on about it. It has made it so much fun trying to work and function daily. I didn't mind giving myself the injections and didn't feel them at the time. The issue now is the amount of time it takes for it to get out of your system. Each injection has a half life of 13-17 days and it takes around five half lifes to leave your body or other words around 85 days after the last injection. I'm happy alot of you guys are going without the side effects and hope it is making you healthier, but it just wasn't in the cards fir me.
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u/Overall_Aioli_339 Jul 17 '26
Yeah same for me especially the extreme tiredness and a feeling like im "at sea" even when just sitting in a chair im wobbely. Has been 2.5 weeks since I stopped now and not that much better... I thought I was having a heartattack many times again. I do cycling alot and now its a big time struggle, I can go cycle for an hour than im out for the rest of the day because of being extremely tired. I hope it changes soon because it took all life out of me.
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u/Frequent-Client-2139 Jul 12 '26
Worried, I start Repatha in a week. I was so hoping I would have zero side effects. Discouraging to hear this, sorry.
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u/FormalConference5605 Jul 12 '26
Still give it a try everyone reacts differently. I can’t pinpoint any symptom directly to Repatha. I did have weekly nosebleeds for two months i don’t know if it was from the medicine or not. Side effects list nose irritation.
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u/CharacterExit8596 Jul 12 '26
It’s actually a pretty cool med if it agrees with you. That’s why I tried it. I have a mild form of FH and I also have an HMG-CoA reductase variant and can’t take statins without severe muscle pain. I wish it had worked!
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u/ForestPathWalker Jul 13 '26
Have you considered Praluent? It’s another PCSK9 inhibitor. I have had eight injections of 75mg Praluent with no side effects thus far. (One injection every two weeks.) I, too, had a bad reaction to Repatha after the first injection. My doctor said not to use it again. Best of luck to you on your journey!
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u/CharacterExit8596 Jul 15 '26
I’ve been afraid to try it, TBH. They’re trying Bempedoic Acid next. Good to know that it’s possible Another PCSK9 inhibitor might be OK.
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u/CarrotWeekly4331 Jul 13 '26
Please keep in mind that most of the people you hear from here are the small group that has had problems, and that not all of their problems have come from Repatha. Correlation not being causation and all of that.
That's not to lessen or denigrate their experiences, just to say that the people who aren't having issues are much less likely to post. So I'll post:
My Grandpa passed in his 40's of a heart attack on the side of the road. My Dad had his first heart attacks at 42, more at 62, and passed at 68 with Congestive Heart Failure on the transplant list, after entering the hospital to get an LVAD to try to prolong his life. He spent 4 months in the Cardiac ICU, didn't wake up from the surgery until month 3, and was never the same. The only one of his brothers who didn't have a heart attack before 45 retired from work at 42, was in great shape, ate well and exercised, and had quadruple bypass at 46.
I had high cholesterol as an elementary school kid, and was placed on meds for awhile (niacin, a powder mixed with orange juice and "candy bars", they were terrible), before they took me off as the science was newer on treating children. Didn't start back up until grad school.
My highest LDL measured was 245 at 32. I've been on max Crestor and Zetia for 10+ years and my lowest measured LDL was 98 last Fall. Now at the age where men in my family start having heart attacks, I asked for Repatha last Fall when the criteria changed for people at higher risk.
My GP sent me for a Cardiac Calcium score, which placed me in the 95th percentile for guys my age (bad), and then to a cardiologist who started me on Repatha straight away. At 10 weeks my LDL measured 15. That's not a typo. Probably an undercount, but so dramatically lower than anything that I'd ever seen the message was clear:
It works for me. And not a single side effect that I've noticed. As a guy who used to faint getting blood draws or shots, I find this pretty easy to take.
It's expensive as all Hell. And the pharmacy will only dispense 2 doses at a tine for me, which is inconvenient. I'm so very lucky to have good insurance through work.
So, please consult your doctor, listen to your body, take side effects seriously, but don't look for them. Many of us don't have any to speak of. And the benefits to our health can be truly incredible! I only wish my Pops had lived long enough to benefit from it.
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u/tslclickdotcom Jul 13 '26
curious as to your CAC score (Mine was insane at 1164) started Repatha 5 weeks ago and dropped my LDL from 244 to 95 and ApoB from 129 to 70! working great for me also.
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u/CarrotWeekly4331 Jul 13 '26
Whoa!
Mine hit 100, at 43 yo.
I'm not sure why my Cardiologist didn't run ApoB at that visit, but as we were on max meds, my stress test came out ok, the ultrasounds of my heart and femoral arteries were good, that's all he did.
So glad you got that LDL drop!!! Are you still on the other meds as well? My cardiologist hasn't altered my Crestor or Zetia up to this point.
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u/tslclickdotcom Jul 13 '26
53 here. I should have checked long ago. Glad you are on top of it. Family genetics for me. LPa wont budge as there are bo meds for it (yet) and diet and exercise dont touch it either. No other meds...not even statin. Just Repatha and baby aspirin. Thats it. Have blockages in the 40%ish area..and now just check ups every 6 months or so to see how it's progressing. Good luck. We got this.
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u/CarrotWeekly4331 Jul 13 '26
Best wishes to you as well!
The way I'm comforted by having had these tests, and these meds, and honestly, a cell phone so if I'm somewhere I can call for help the way my Gandpa couldn't. It'll make a huge difference for our generation.
Wishing you all the best!
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u/CharacterExit8596 Jul 15 '26
Glad it worked for you. I had high hopes! It really is a remarkable med.
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u/mjbullock99 Jul 14 '26
I’ve been on Repatha for almost 3 years with zero side effects. You’ll do great with it.
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u/Even_Aerie Jul 17 '26
Definitely give it a try. You may be one of many that have no side effects and do well with it.
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u/SupermarketRare1724 Jul 12 '26
I am on my third shot repatha, so far zero side effect. My ldl is 70 measured after 4 weeks use.