Anyone stopped taking Repatha after trying?
I experienced stiffness and upper back pain the morning after injecting first dose of Repatha. Began taking Bayer, then Advil, when PCP suggested ibuprofen. On day two, the back pain continued to my shoulder socket and pain increased from about a 3 to about a 6. Today is day four and I am at 6x the recommended dosage of Advil to try and manage the pain. Sent note to PCP this morning that I'm leery about taking a 2nd dose of Repatha and would like to come off of it. Did everyone else soldier on through the 2nd dose? Or tempted to quit but didn't? I injured my back about 12 years ago. It healed with no problems. But the Repatha seems to be hammering at the spot of that old injury. I feel certain it's the Repatha, because nothing else has changed (i.e., not taking any other Rx's, haven't re-injured myself, and was feeling tip-top before the injection). Yoga and ibuprofen aren't having any effect. Sleep has been difficult the last two nights. I can cope okay with the stomach churning and chills; it's the increasing pain and sleeplessness that are wearing me down. If you did quit, can you say roughly how long the Repatha stayed in your system until you felt better? This is the 140 mg/mL dose that you inject twice monthly. On it for high cholesterol of 375 mg/dL.
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Thank you. I have used a noise machine for years and I find I cannot sleep without it. The insomnia I experienced from Repatha, however, was a physical reaction to the drug. After a week of stopping it I find I am sleeping much better. It is not a psychological thing as I didn't know it was a possible side effect until I researched it after the fact.
It is unfortunate because the drug really works in lowering my cholesterol. I am 72 with a 188 calcium score and a very strong family history of heart disease so hopefully my doctor can recommend something else.
It took about 2 weeks for my insomnia to improve after stopping Repatha.
I just got my blood work done in October and now have prediabetes. There is no history of diabetes in my family. I am not overweight, pretty fit for a 68 year old and eat a Mediterranean diet. So, I am going to talk to my cardiologist and ask about getting off of Repatha and just monitoring my LDL closely. My LDL was 82 and now it's 42 so that is good of course.
I'm a very healthy 70 yr old ?! My family history of high LDL should be documented in who's who. My Dr. is now suggesting Repatha. My older sister seems to be handling it well and it has really lowered her LDL. Didn't know about the insomnia side effect, that's not good. Also, this LP(a) thing is now affecting my kids.
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1 ReactionYes, i have the same symptoms as well! My legs are extremely stiff along with my hamstrings and lower back. I wont’ continue to take it. I can’t wait for it to leave my system so I can be pain free. I’ve tried Tylenol, Advil and Motrin. Nothing has helped and i feel like I’m suffering so bad especially in the mornings trying to get out of bed. I’m 53 years old and feel like I’m 99.
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1 Reaction@con123 good to know. Because this drug has made me feel like the “tin man” in the wizard of oz. I can’t move, very stiff and miserable! I regret taking this , and wish it was in pill form, but now I’m stuck with it in my system for the next few weeks. I wouldn’t recommend this to anyone. Unfortunately i can’t take statins and was hoping this was my “miracle” drug. But instead, it’s my worst nightmare.
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2 Reactions@gerrycf everything you mentioned is the same with me. Unfortunately I’ve had high cholesterol since i was in my 20’s. I’m 53 now and feel like I’m 99 being on Repatha. I’m going to stop taking it and now take my chances. I can’t take statins just for the same reasons, and was hoping Repatha would be my best alternative. WRONG!!!!
@egoffredo122 so sorry to hear. I guess I got used to it but noticed it raised my sugar and I did however switch to Praluent 75 and sugar dropped and either I got used to the aches or Praluent is less. I heard on the radio a new injection given by your provider, (guess not self) but after first 2 injections then only 2x year. I’m going to ask my cardiologist about it. I can’t stop because I have heart disease and now 4 stents LAD. My cholesterol dropped immediately from 302 to 160. The pills hurt my body much more than Repatha and Praluent.
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1 ReactionI took it for maybe 3 months then I started to get a very runny nose. After my last shot I got the runny nose then sore throat and classic cold symptoms. Nasal and bronchial congestion. After two weeks I am feeling better. I did not take another dose. Due for one in a week now. Wondering if I should take it?
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1 Reaction@peter800 Here is the most updated study with this issue:
Repatha (evolocumab) can sometimes cause upper-respiratory–type symptoms in a small number of people — things like runny nose, sore throat, or cold-like symptoms are listed among the more common side effects. However, it can be tricky to tell whether these symptoms are truly from the medication or just a coincidence, especially during cold/flu season.
A few points that might help:
• The timing matters. If your symptoms consistently appear right after each injection and then improve as the dose wears off, that pattern could suggest a medication-related side effect.
• “Cold symptoms” from Repatha are usually mild. True viral infections are still more likely, especially if you had bronchial congestion and symptoms lasting two weeks.
• Stopping or delaying a dose is a medical decision. Because Repatha significantly lowers LDL and reduces cardiovascular risk, it’s important to weigh potential side effects against the benefits.
What most clinicians recommend:
Before taking the next scheduled dose, let the prescribing doctor know what happened. They can talk through options such as:
continuing Repatha with monitoring,
adjusting timing or evaluating for other causes of symptoms, or
switching to another cholesterol-lowering approach if needed.
If you’re feeling better now and symptoms weren’t severe or dangerous, many people do end up continuing the medication, but it’s safest to check with your provider first.
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