Repatha - your views

[Rockcake]

hello everyone, I’ve been asked to take repatha as I can’t tolerate statins. Has anyone had experience of Repatha? I am a bit fearful of injecting myself with a drug. I try to keep well with exercise, diet, and supplements. However, I do have AF and stable angina and seem to be getting AFib episodes more often.

[DicCarlson]

Well, Peter Attia (longevity researcher) takes it. The injection is quite easy to use (not a regular needle). If you have exhausted ALL the diet and supplements, it might be worthwhile.

reddit.com/r/PeterAttia/com...

[Rockcake in reply to DicCarlson]

Thank you very much for your reply. I’ll look into Peter Attia. I’ve now asked about it on the Atrial Fibrillation site as well.

[Sperlie722 in reply to DicCarlson]

I’ve been on it for years without any problems. Very short needle that’s easy to inject. I use my thighs

[Rockcake in reply to Sperlie722]

Thank you Sperlie. The reviews I’ve seen are mainly very negative, saying they’re still suffering side effects months after stopping and bruising at injection site, and worse! Good to know you are happy with it and presumably healthier?

[Sperlie722 in reply to Rockcake]

Yes, healthier! And happy. I want to add that I never got any bruises from injecting Repatha. Quick note - after using an alcohol wipe at what’s to be the injection site, be sure to let the alcohol dry. Otherwise, there will be slight burning when the needles passes through the wet alcohol

[Rockcake in reply to Sperlie722]

Thank you, that’s good to know! And thanks for the tip re alcohol wipes. I haven’t made the decision yet, but getting there!

[Angelfliss]

I’ve been on it for 6 years with no problems. I bruise very easily as I am on blood thinners but never bruise using these injections which are really easy to use.

[Rockcake]

thank you. It’s good to know you’ve had no problems and hopefully your heart health has improved in the 6 years on Repatha.

[valeriep]

I'm about squeamish about injecting myself too, but really, it's very easy. It's like an Epipen - like pushing a biro into your thigh and then pushing down the top. You just have to clean the area thoroughly beforehand and pop a plaster on it afterwards (which you can take off the next day). I do get small bruises, but not excessively. And the results on my cholesterol readings have been incredible!

[Rockcake in reply to valeriep]

Thank you for your reply and reassuring words re injecting. I think I will be ok with that, but am concerned about possible side effects. Did you have any?

[valeriep in reply to Rockcake]

I asked the nurse about side-effects when I first went on it and she said I might feel like I was getting a cold or flu, but it would quickly wear off. For the first few months, I did have a slightly snuffly nose for 24 hours after each injection, but honestly, if she hadn't said that, I don't think I would have noticed it. But, as I said, after the first few months, I stopped getting that and my cholesterol levels plummeted, so it was worth the slight inconvenience.

[Rockcake in reply to valeriep]

Thank you again. I have Afib and stable angina. I’ve not had any very serious issues - so far. It’s mainly the paroxysmal Afib which comes out of the blue and makes me feel awful for about 12 hours. Perhaps you have the same conditions? Yes, I’ve been told side effects as you describe, but have read patients reviews which have described lots of aches and pains, and worse. Have you been on it for long?

[valeriep in reply to Rockcake]

I think I've been on it for about 4 years now and the reason why I take it is because I have Familial Hypercholesterolemia, which is an inherited condition that means my liver does not process cholesterol properly and stores it up in my arteries. When I developed angina, they had to insert 3 stents into my chest and I've also had 2 endarterectomies (one on each side) to clear my carotid arteries, which were 90-95% blocked, so putting me at a high risk of stroke. For me, being prescribed Repatha was a last resort, because even on the highest dosage of statins and Ezetimibe, my cholesterol would not go below 6.5 and had risen to 7.5 again. And the Repatha worked! It's now down to 3.5.

There have been other discussions about Repatha on this website and I don't think I have ever seen anyone complain that it gave them aches and pains. You also have to remember that when people talk about bad side-effects, they are usually in the minority. The vast majority of us, who don't suffer from them, don't bother to say so! Repatha is an expensive drug and not one doled out lightly. If your doctor thinks it will help you, why not try it? You can always stop if it doesn't agree with you.

[Rockcake in reply to valeriep]

Thanks so much for explaining your situation. (I know about familial hypercholesterolimia. (I’ve read a lot and watched a lot on you tube since being diagnosed.) It’s so good that you have had success with Repatha. In your situation it must’ve been a godsend.

My recent blood tests showed total cholesterol 7.4, ldl 6.0, HDL Ratio 5.2 , and this is on no meds, just supplements like coq10 and magnesium and other vitamins as I can’t take statins. Consultant said my LDL is too high and prescribed Repatha. I know how expensive it is, and what you say about the negative views I’ve seen is true. If I had your condition I wouldn’t hesitate - as you say I could try it and stop if it doesn’t suit me. Thank you again, it has really helped. I’ve tried to keep it short!

[valeriep]

Good luck, and I hope Repatha works for you too!

[Rockcake in reply to valeriep]

Thanks Valeriep, got to be honest still haven’t fully decided to take it. I’ve not had good outcomes with at least 3 drugs - Bisoprolol, Viazem, and of course statins. The former, even the docs told me to stop taking. Either they turned me into a zombie or they lowered my heart rate too much.

One last question if I may - have you, since lowering your cholesterol so well (undoubtedly due to Repatha) had less incidents of angina?

[valeriep]

Good morning, Rockcake! I don't suffer from angina at all now, but that is due to my stents, which had an immediate beneficial effect once inserted. The reason why I'm on all the meds is to try to keep my arteries clear of plaque, so as not to have a recurrence. I was surprised that the doctors are trying to treat your angina and AFib with drugs alone. If you don't mind me asking, has surgical intervention not been suggested?

[Rockcake in reply to valeriep]

Good morning Valeriep! I don’t mind at all you asking, indeed I thank you for your interest. No, I have never been offered any surgical intervention. My Bio gives a précis of what’s happened, and when. Tbh, it’s only because I have hypothyroidism (for which I’m pleased to say I do take my medication) that, at a yearly check with the consultant of endocrinology at local hospital recently, he was concerned about my LDL level, and suggested Repatha. He was very kind.

It’s hard to be precise, though I am keeping a daily journal now, but I think I only get Afib about every 2 to 3 weeks at most. Haven’t had the very different, scary and awful chest pain of angina for over a year.

I am sure that with me it’s any form of stress that causes an Afib episode. I do a lot to avoid this nowadays.

I believe it’s the ratio that counts with cholesterol not the total cholesterol. My ratio is now 5.2 as mentioned. This doesn’t seem too bad to me, but I’m Still researching.

So good to know the stents gave you immediate relief and great that Repatha has kept your cholesterol low.