Repatha and severe chills / feeling extremely cold

ferre, late onset chills are a recognized side effect of Repatha. It is thought to be an antibody reaction to the medication It will be best to see your provider to make certain that Repatha is the cause and to maybe to change this medications. It must be fairly intense to be so cold that you don't want to go anywhere.

Hi @ferre, welcome to Mayo Clinic Connect. I’m sorry you’re dealing with this. Feeling constantly cold or having chills severe enough to keep you from going out sounds very disruptive. Since you’ve been taking Repatha for over a year before these symptoms started, I’d encourage you to let your healthcare provider know as soon as possible. They can help determine whether this could be related to the medication or whether something else, such as an infection, thyroid issue, anemia, or another medical condition, might be contributing.

While you’re waiting to hear from your provider, I’m wondering if you could share a little more. Did the chills begin suddenly or gradually? Do they happen all the time or mainly after your injections? Have you noticed a fever, weight changes, fatigue, or any other new symptoms?

I see @gently has similar concerns. I’d also be interested to hear if any other members taking Repatha have experienced something similar.

I agree, something is amiss, and whatever it is should be corrected.....or stopped. It may be late-onset hypothyroidism......maybe you just need to take another tablet daily with a low dose of thyroxin. If that's all it is.....whew!

Thanks much

@jlharsh "AAll the tests have been taken, and even more, but everything is okay. I am perhaps 100% sure that Repatha is a major factor because it started exactly after I began using it. Generally, no medicines are good for humans, especially biological medicines, and they can have unpredictable, even very severe side effects. I understand that fear makes people take anything, but it would be good if these medicines were put under stricter control and research. Right now, people are being treated like guinea pigs. Repatha and all biological medicines are not meant for humans, no matter what is claimed. I believe the biggest culprit is Repatha – I have been to the doctor, but they only stare at the lab results without listening to how the patient actually feels. To be completely blunt, it’s starting to feel like I’ve already skipped one dose, and I will continue not taking it. It doesn’t matter what happens now because no one can endure this heavy freezing that completely paralyzes you. Who knows if Repatha has left a permanent mark on the body's temperature regulation system. Frankly, I am so angry that these expensive medicines are not studied in the long term, and that they think using Chinese hamster ovary cells (CHO cells) is acceptable. A human is a human, and that medicine does not correspond to the right way – using humans as guinea pigs. The text is harsh, but the symptoms are also terrible. I have stopped the medication because the coldness is so intense. We shall see. Thank you. I have taken the thyroid test and CBC (complete blood count), and now all the tests again, including T4 and B-vitamins, to see if that explains anything. Thank you.

@ferre So sorry you are going through this! Taking meds is indeed a gamble, as every body is different and reacts differently to medication, both in the short and long term. I was just about to start intensive antibiotic treatment for nontuberculous mycobacterium avium with meds that often cause serious side effects—and then out of nowhere I had a low moderate stroke. Luckily, I emerged from it with full movement restored, but now I know I have 379.7 in lp (a) and have been put on 80 mg antorvastatin and 75 mg of clopidogrel. The doc wants me to take Repatha also, but since I am suddenly on FIVE meds from nothing I want to give my body time to adjust to this new onslaught. Amazingly, I am very fatigued but otherwise doing ok-for now. When I feel ready, I will try Repatha.

That being said, side effects may kick in later as they do for many people and as we all know we have to take this day by day. It took a lot for me to start the lung treatment but once I got a really great doctor and she told me it was absolutely necessary to halt the progression of the disease, I decided I had to try the treatment. And am increasing the last med at my own rate because of my history of bleeding from the lungs.

My rec is: find the best possible doc you can—someone with a lot of experience dealing with your condition and who is smart enough to really listen to you and modulate your care according to what you are feeling. Also respect your feelings, observations, sensations every step of the way as only you live in your body. Finally, find a couple of people that are going through similar journeys (though no two are the same) and get to know each other. I met two absolutely wonderful persons through this Mayo Clinic group for my lung condition and they have been a godsend to me in terms of emotional and clinical support. I hope you find people like that also.

Wishing you all the best, and hoping we have something very soon for our lp (a) conundrum. It’s coming!

That's odd I'm on Repatha, my two sisters and best friend also and none of us have had bad reactions. Our cholesterol and Lp(a) have all dropped. soon I hope to be off statins !