Statin intolerant & repatha intolerant - British Heart Fou...

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Statin intolerant & repatha intolerant

Denjones profile image
23 Replies

Unfortunatley I have found that my body can't tolerate statins or reptha injections although I really need to get my high cholesterol reduced. Very frightened as i really do need something to reduced my risks.

Anyone else experiencing this? What medication do you take instead?

Thank you

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Denjones profile image
Denjones
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23 Replies
Sb1171 profile image
Sb1171

Yes. Atorvastatin caused an extreme liver reaction and doctors are unwilling to try any other statin. I am on Inclisiran and Ezetimibe. These work for me and I have no side effects. Like Repatha, Inclisiran also targets PCSK9, but is not an inhibitor (blocking its effect) but rather limits it being produced in the first place.

Frogman53 profile image
Frogman53

My wife couldn't tolerate statins so they started her on Ezetimibe but they did'nt lower it enough. They have now put her on Nustendi which I gather is a rather new drug and she's OK with that.

Denjones profile image
Denjones in reply to Frogman53

Thanks for replying. How long has she been on them?

Frogman9 profile image
Frogman9 in reply to Denjones

She's been on them since last November.. No real problems. I gather they're rather expensive though £55 a month so it will be up to your GP.

Classic100 profile image
Classic100 in reply to Frogman53

Hello. Sorry your wife could not take satins. I feel they also upset my stomach and feel pretty awful on them. Would you mind informing me how your wife knew she was intolerant of satins as I feel this will help me understand why this medication makes me feel so bad . Thank you.

Frogman9 profile image
Frogman9 in reply to Classic100

Hello it affected her stomach and her urine turned the colour of coca cola once she stopped them it cleared.

Classic100 profile image
Classic100 in reply to Frogman9

Thank you for your reply so much appreciated.

Lowerfield_no_more profile image
Lowerfield_no_more

NHS England produce a 2 page pdf 'Statin Intolerance Pathway' which defines the options health professionals should be following if you are truly statin intolerant, which you may find useful. You will find it by doing a web search. Not sure what the other home countries do. If you cannot take any medication then all you can do to reduce your heart health risk is to follow the usual guidelines about lifestyle including diet, exercise, body weight, alcohol, smoking etc. Nonetheless although gave up smoking decades ago I don't beat myself up about sticking rigorously to the rest, just take a pragmatic approach to it all. One of my Aunts had the same genetic high cholesterol I have, had three heart attacks early in life, never followed guidelines, stopped taking statins in her late 70s, and still lived to 95, and enjoyed a full life along the way.

Denjones profile image
Denjones in reply to Lowerfield_no_more

That's such a positive view point. Thank u. Do u not take statins? And do u know how many years your anuty did take them? If u don't mind saying.

Lowerfield_no_more profile image
Lowerfield_no_more in reply to Denjones

I have taken statins for 25 years! Fortunately I don't suffer any side effects. I can't say how long my Aunt took them, but probably no more than ten years. I am a firm believer in what statins can do based on personal experience, but if you can't tolerate them there is other medication available to try plus lifestyle measures as noted above The best advice is to make the best of what is available to manage your lipids without making your life a misery, enjoy what you have, and don't worry about something that may never happen.

Izz18 profile image
Izz18

hello, I couldn’t tolerate statins either but have been taking Bezafibrate for many years with no side effects.

NannyPat1 profile image
NannyPat1

I have Inclisarin injections, lowers LDL brilliantly and no side effects.

haynatcha profile image
haynatcha

I had STEMI Jan 2022 and I am statin intolerant together with ramipril aspirin and other medicines which have caused severe side effects which resulted in A & E admission within a few days following discharge from angioplasty. This all caused great hesitancy trying more drugs. I recently learnt that I have a high risk of further heart attack due to a genetic marker and despite sticking to a strict diet it would make little difference. This was causing a lot of anxiety so I finally decided to start the inclisiran injection. So far , so good! No side effects at all!

Denjones profile image
Denjones in reply to haynatcha

Very glad u are doing ok Did you try repatha/Evolocumab injections before inclisiran injections?

haynatcha profile image
haynatcha in reply to Denjones

No the inclisiran injections are new and after the first two which are 3 months apart I will only have 2 a year which is given by my GP. I chose not to try the other injections because I was told there are less side effects (if any) with inclisiran and it had shown to reduce cholesterol by 50 percent after 3 months. It is still early days for me but I can honestly say that apart from a little pain at the injection site which lasted for about 10 minutes, it feels like I haven’t had anything at all.

Classic100 profile image
Classic100 in reply to haynatcha

Hello. At the moment I am finding I get terrible side affects from 80 mg astrovasatin stomach upset and severe diarrhea. Could you please let me know how you knew you could not tolerate satins as this will be so helpful for me Thank you

Classic100 profile image
Classic100 in reply to haynatcha

Hello. Sorry to hear the difficulties you had. I feel I cannot take satins which I am currently taking. 80 mg Astrovasatin. It makes my stomach upset and I feel unwell on them. Could you please tell me how you knew you were intolerant of satins as I think this may help me. Thank you .

haynatcha profile image
haynatcha in reply to Classic100

Hi, I started taking statin on discharge from hospital following heart attack. On the 4th day I started feeling very unwell and developed sharp pain in my right side down my neck, arm, back and across the right side of my chest. I was unable to lift or move my arm and felt sick dizzy and faint. An ambulance was called and I had ECG but this was ok but they insisted they take me to A&E. Bloods were taken which were abnormal and I was taken to an AMU ward. This was during the COVID era and unfortunately I had a very traumatic experience on this ward and discharged myself. I had a telephone appointment with cardiologist a few months later and told him what had happened and that I had stopped the statin and he confirmed it had probably been caused by the statin. At the time it was very difficult to see my GP and I don’t think they really knew enough to help. The pain did gradually go after stopping the statin and now have inclisiran injection. Hope this helps. I’ve learnt one size does not fit all. Listen to your own body and discuss an alternative with your specialist if a medication isn’t working for you. I wish you well.

Wk67 profile image
Wk67

Hi, it is a problem. I tried 4 statins, which made me ill. Have recently tried Ezitimibe, which upset my gut a lot, so stopped. Have increased my gut fibre, taking Psyllium husk capsules. Meant to absorb more cholesterol from lower gut. Feel much better, awaiting blood test results. Hope you get a solution.

Classic100 profile image
Classic100 in reply to Wk67

Hello. Could you please let me know how satins made you feel so ill. I am most sure my stomach issues are related to being prescribed astrovasatin 80 mg. Thank you

Wk67 profile image
Wk67 in reply to Classic100

Just sent a long reply, and it disappeared!

Wk67 profile image
Wk67 in reply to Classic100

Hi, got severe muscle aches and lethargy. Tried simva, atorva, rosuva & another over 18 months. Had blood test. CK ( creatine kinase) levels dangerously high. Told to stop. Body was dissolving muscles. Ezitimibe made gut overactive, 3am, 6am & several more times a day. Trying to lose 2 stone. Increase activity. Chol level 6.8. BP could be better lower, G P may investigate injection in 6 months, but not easy to get. Both parents had strokes.

Best of luck in getting sorted.

Classic100 profile image
Classic100 in reply to Wk67

Thank you much appreciated

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