Statins.: I recently stopped taking my... - British Heart Fou...

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Statins.

Noodlesalad profile image
41 Replies

I recently stopped taking my statin as I found a definite correlation between how well I slept. I have always taken my statin Atorvastatin as prescribed one at night before I go to bed.I could be literally falling asleep and took the statin and hey presto suddenly no longer tired. Plus as it is with my Fibromyalgia and osteoarthritis my muscles were feeling a lot weaker and I had more pain. I decided to try to take one statin every other night guess what the night I didn't take the statin I slept really well.

Then I got told I had to increase my blood pressure medication and they would change my statin. Whilst waiting for my new statin which still hasn't arrived I decided I needed the sleep more so after a week of not taking the statin I am experiencing the worst pain up and down my body which is worse at night. Last night in desperation I got up at midnight took the statin and a blood pressure tablet as I had forgotten the late dose and eventually I fell asleep.

My question is after all that has anybody else experienced these awful pains, muscle twitching and burning feet if they have stopped their statins.

I am normally a very compliant patient but not sleeping has been really dragging me down.

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Cee-Cee1 profile image
Cee-Cee1

Hi Noodlesalad - just wanted to send you a very warm welcome to the forum. I didn't notice any side-effects while taking prescribed statins (80mg Atorvastin daily) during a stay in hospital last year awaiting a triple bypass but it was discovered, during a pre-op blood test, that my liver is completely intolerant to statins unfortunately. I am currently taking a drug called Ezetimibe which works in a slightly different way to statins, by blocking cholesterol from being absorbed by the body rather than stopping the body producing cholesterol and lipoproteins as a statin would. Ezetimibe is usually prescribed together with a low dose statin making it more effective.

I'd like to suggest having a word with your GP as there are lots of different statins that are available. Some people find that changing their statin really works for them.

Hopefully some of the more knowledgeable members on the forum will be along soon to help with your query. Carol

Noodlesalad profile image
Noodlesalad in reply toCee-Cee1

Hi CeeCee Thank you for welcome and responding to my question so quickly.

Sounds like you have been through the mill having a triple bypass well done you.

I will take your advice and speak to my GP next week hopefully by then he will have had the letter from the cardiologist with his updated requests on my meds.

Take care. Pauline

Cee-Cee1 profile image
Cee-Cee1 in reply toNoodlesalad

You're very welcome, Pauline - I'm just sorry I'm unable to be a bit more helpful! I'm really happy these days, it's 17 months since the bypass (I'd a HA in January last year and the bypass in February), and after the initial recovery period, I can honestly say that I feel fitter and better now than I did for a couple of years before the HA. Good luck with the GP next week, it'd be good to hear how you get on if you have time. Carol

Noodlesalad profile image
Noodlesalad in reply toCee-Cee1

I'll keep you posted. You have helped me just by replying.Good to hear you are feeling fitter than you had for a couple of years.

I was recently diagnosed with Coronary artery disease and to be honest until I saw the cardiologist last week I felt fine but when he said he was increasing my blood pressure medication and statin because he wants me to be as comfortable as possible I felt like I wanted to give up. My father and brother both died very young with heart problems and my brother was as fit as a butcher's dog as the saying goes, so now it's just me my mum died two years ago with cancer and dementia I was not expecting this year to present the problems it has. Some times ignorance is bliss. Don't get me wrong am glad that my problem has been discovered before in the words of the cardiologist I have a heart attack or stroke its just knocked me for six. I live on my own and looked after mum for six years. I have two good friends who would help me with anything but at the end of the day really it's just me.

Sorry to be a misery. I am so happy to hear you say how wonderful and fit you now feel since you're HA.

Cee-Cee1 profile image
Cee-Cee1 in reply toNoodlesalad

You're not being a misery at all, Pauline! I'm glad just having a wee yarn has made you feel a little better and sometimes knowing that someone has broken through the 'dark clouds' to live happily again is good thing to hear - I know it always helps me to hear peoples stories of things getting better.

I live on my own too, having looked after my own Mum who passed away in February 2021 aged 91, my big bruv died six months prior to that in July 2020 from a nasty type of blood cancer (myelodyplasia) 11 or 12 weeks after being diagnosed - he was one of the fittest man I ever knew so it was a big shock! I'd the HA & bypass in Jan/Feb 2022 then my big sis was diagnosed with breast cancer in September 2022! She's just got the all clear and all's well again - YAY! So, I truly understand how you must be feeling. To be honest, if I'd heard the words "making you as comfortable as possible" from the surgeon who looked after me it would have scared the living daylights out of me! You'll get there.

Once you've had a word with the GP or the cardiologist, got the medication tweaked and in place, had all the pep-talks about how to look after yourself etc. and everything's settled, you'll be able to better see a way forward much more clearly. It's just this time in between when not everything's in place yet and it's appointment after appointment that'll get you down. Onward and Upward as they say! Please keep in touch and let us know how you're getting on and if you're ever feeling really down just PM me and we can either cheer each other up or you'll get fed up listening to me rabbiting on! 😀 x

Noodlesalad profile image
Noodlesalad in reply toCee-Cee1

It's uncanny how you have been through similar family and life changing events as I.Both my mum and my sister were diagnosed with colorectal cancer in 2019. My sister had surgery and chemo and now is all clear praise the Lord, she lives in USA so it's not like we're round the corner from one another. My mum bless her heart was so bad with her dementia by the time she was diagnosed my sister and I decided surgery at 84 would have been to stressful for mum, she certainly went into a downward spiral when the consultant told her and repeatedly kept asking me what she should do. It was a nightmare for her and me it just made mums thought patterns and behaviour much worse and I it wasn't the cancer that ended her life but the dementia.

Thank you for kind words and support I'm so happy to have joined this site and all the response I've had.

Cee-Cee1 profile image
Cee-Cee1 in reply toNoodlesalad

Your poor wee Mum, Pauline - having had to go through so much, dementia is such a horrible, nasty thing. And your poor sister as well, I'm so glad she's had her good news! I remember the day, a few weeks ago, when mine rang to say the magic words "All Clear" - what an amazing day that was!

Mum was 91, still living alone, independent doing her wee bits of housework, still great fun to be with and just had the usual aches & pains of old age. My younger brother and I both lived really close so called in every day at different times. She passed away in her sleep. Oddly enough, I'd just started back to work after furlough that day and called in for a cuppa on my way home to tell her all about it and Bruv dropped in unexpectedly for a visit while I was there having finished work early - we'd a good laugh that night. It makes us feel fortunate (for want of a better word!) and made the situation much easier to deal with at the time - it could have been so much worse.

I'm glad you've joined the site too, and the other members will be as well. It's always good to welcome a new friend and hear their stories. We can all help each other that way.

Noodlesalad profile image
Noodlesalad in reply toCee-Cee1

Thank you.My brother was out in Uganda doing aid work and had an aortic aneurysm burst, naturally his base was a very remote village and by the time they were able to get transport to take him to the nearest medical centre he was gone. I saw him last about five months before he flew out to Uganda and my mum was with me we'd arranged to meet in a book shop and I saw him before he saw me I turned and walked in the opposite direction with tears running down my face because he'd lost so much weight and looked ill.

At autopsy there was evidence of numerous MI's and as I said he was a fitness and sailing nut, he kicked life to the limit and at his funeral there must have been 200 people. I still miss him to this day. A much loved brother and friend.

My parents were divorced it was three days before I was 18 and couldn't understand why I hadn't heard from my dad. Then my sister phoned me to say the police had contacted her my dad was found at home by a neighbour they said he'd been dead about a week. He was Irish, he never raised his hand to us, and one day he arrived home with a goat because my mum kept on at him to cut the grass, another much loved, kind, generous man, gone on his own.

I was so privileged to be able to be with mum right to the end, telling her how much I loved her and the amazing beautiful journey she was about to go on. Mum hadn't opened her eyes for over a month before she passed. I would have loved her just to say one word before she went. I was so glad to be with mum at the end knowing my dad and my brother were alone.

Thank you for all your kind words. X

Cee-Cee1 profile image
Cee-Cee1 in reply toNoodlesalad

I'm so sorry, Noodlesalad, that's incredibly sad, and exactly what I mean about wee Bruv and I feeling fortunate in how Mum's death came about. I'm SURE your Mum knew you were with her, she would have been content to know that she didn't have to speak or open her eyes, your presence must have been such a great comfort for her and such a privilege for you as well. xox

Noodlesalad profile image
Noodlesalad in reply toCee-Cee1

I think mums dad's brothers and sisters are truly the best friends we ever have on our journey through life, some times we don't realise that fully till one of them is gone.I'm sure you have amazing happy memories of your lovely mum and your brother.

I remember growing up and my sister and I fought such a lot she's the eldest, and I recall the three of us sat round the breakfast table one day and she and I were arguing full throttle, my brother suddenly jumped up and shouted Shut Up your both getting on my nerves ,my sister's response was You haven't got nerves at your age shut it, my sister would have been about 15, me 13 and my brother 12. I am certain we drove mum mad. At that time we didn't see much of mum because she had three job's to keep a roof over our head's, we were so ungrateful and lazy. However we all had to get weekend job's to help mum and for pocket money. We three turned out really well, independent, hard working and financially supported mum our whole lives whatever mum wanted she got, holidays, jewellery, money and I am so glad that our careers back then enabled us to do that.

How does the song go.. Always look on the bright side of life, because for every catastrophe , calamity and stuff I've been through I know for sure there are millions of people worse off than me.

Thank you once again.

Cee-Cee1 profile image
Cee-Cee1 in reply toNoodlesalad

My life was much the same , Noodle - my older sister and I weren't particularly close when we were young - she's the eldest too (7 years older than me), she didn't really bother with me to be honest. We've become much closer as we've aged. My older brother who passed away (6 years older) we called the "quiet man", he never really shouted or anything, he just tootled along very patient and kind most of the time. My younger brother (9 years younger) and I were always very close - he was "mine" as soon as he was born and came everywhere with me! 😅 He just lives round the corner from me and has given me the bonus of an extra sister in his lovely wife and three brilliant kids (all in their twenties now!) who love their "Auntie" (me!) 😅

I do tend to look on the bright side of life, as you say, there are so many people with much worse problems than us. These days I tend to wake up in the morning wondering what the day has to bring and take great joy from the tiny things - I've had three Jays visit my garden over the past week (first time in the 18 years that I've lived here) and I'm absolutely thrilled about it! I firmly believe that taking genuine pleasure from the simplest of things, and appreciating them, is one of the foremost aids we have for good health. Although, if I have a miserable day in work, I have to firmly remind myself!

And my health has been even more improved by having these lovely yarns with yourself - thank you! Take care and I hope you've woken up with a smile this morning. Carol x

Noodlesalad profile image
Noodlesalad in reply toCee-Cee1

Hi CarolThank you for your lovely reply.

Last year I embarked on a crafting binge and thought myself resin art which I grew to love. It gives me immense pleasure and I can give my art as gifts so other people get to enjoy it too.

I then decided to bring the outdoors in as I live in an apartment and started with easy plants I knew wouldn't be killed off easily and didn't need too much water, so I started with different heights and varieties of succulents. Then I ventured into other hardy plants like yukas and cheese plants, elephant ears and it soon became apparent that I needed another trolley to keep them. Out to the charity shop found a wonderful vintage drinks trolley with two shelves.

I loved getting up every morning opening my curtains and there were my ever growing community of plants.

Sadly after about six months I started to notice a tramline marks on my carpet. I asked my friends what did they think this mysterious tramlines were but even they were mystified.

I couldn't see anything on the carpet but I treated the plants with a pest killer and waited, the lines in the carpet weren't retreating so I did some online research. From everything I read it was clear I had a bug problem I couldn't see. I sprayed the affected area of carpet with allsorts of recommendations but it wasn't getting any better.

Long story short decided the plants had to go and I needed a new carpet and would get someone in to decorate.

I really miss my indoor garden, all that greenery that thrived despite being a complete novice plant carer.

I will be starting my resin art again soon as that also is easy and I love just trying out random designs and effects.

Hope you're having a good weekend Carol.

Take care Pauline

Cee-Cee1 profile image
Cee-Cee1 in reply toNoodlesalad

That's a shame about your indoor forest, Pauline. I have to admit I do 'try' with my indoor plants, but I'm hopeless and managed to murder a scented pelargonium just this week by overwatering. They're a type of geranium with lovely lemony scented leaves and the gorgeous smell sometimes filled the room when the sun hit it through the window. Ah well, I'll just have to try again - it does have an upside as I'll get a lot of exercise in walking for miles round the garden centres looking for one!

I was reading another really interesting post this morning from a member called   Rainfern and her post was all about how a positive mental attitude, and enjoying life, is just as important as exercise in terms of recovery and living with illness. It was very thought provoking. I know exercise is the gold standard, and we all need to do it, but not everyone is able to get out and about and being happy and appreciative is also important. I think your crafting is a brilliant way to do this too, especially when it also brings you joy to be able to gift your creations.

In the winter, when it's too dark to go out alone for my walks, I crochet wee pram or bigger 'knee' blankets with little bits of leftover wool. My sister volunteers in a Heart Foundation charity shop and she gets them for the shop - she was telling me that they're selling for £9.99 and they're really popular. I was surprised at that and it gave me a great deal of pleasure knowing that something can be made from almost nothing and is benefitting the charity and benefitting me as well by stopping the boredom.

I do hope you get sorted out this week with the GP and a new statin regime. I'm going to ask the GP, at my next appointment, if I can try Rosuvastatin, having read a lot of replies to your post here where a few others, with intolerance problems like my own, have finally been able to settle on this one. There are so many to try!

Hope you're enjoying the weekend. Take care, Carol x

Noodlesalad profile image
Noodlesalad

Hi JanThanks for your response. I did try taking the statin earlier in the day instead of the evening and I may try that again because clearly my body is complaining about not having the statin.

It's annoying because a couple of months ago my GP said my cholesterol was down to 3 I think mostly due to me eating salad give days a week that's why I thought just not taking it for a week might help me sleep.

Take care Pauline

Noodlesalad profile image
Noodlesalad

Will do. Thank you.

JennyRx profile image
JennyRx in reply toNoodlesalad

you can take atorvastatin in the morning as it has a longer half life than the other statins. (Pharmacist here). So you could swap to taking it in the morning and it will still work.

Noodlesalad profile image
Noodlesalad in reply toJennyRx

Thank you Jenny a couple of people have said the same thing, so I'm going to do that till I get the prescription for new ones from my GP.

benjijen profile image
benjijen

Yes. With various meds I've been told 'it's not a side effect'. Rubbish. Within a couple of weeks of stopping atorvastatin my pains had gone and I could actually walk along my hallway again without holding on! They try you on the cheapest first which is understandable. I'm now on rosuvastatin which actually does decrease my cholesterol ( atorvastatin didn't!). Also no side affecysascyet.

momander profile image
momander in reply tobenjijen

Hi there,I'm sorry you didn't get I with atorvastatin. You say it didntbdecrease your cholesterol? Was that determined by a blood test? It is actually one of the expensive statins not the cheapest. I hope you ate getting on better now

benjijen profile image
benjijen in reply tomomander

Yes it was from regular blood tests. Rosuvastatin reduced it.

JennyRx profile image
JennyRx

At the moment it is, really terrible prices from the wholesaler. However the NHS don’t pay that cost so it doesn’t cost the NHS that much - the pharmacy carries the cost of the difference which is making it very hard for pharmacies to survive financially. Hence so many of them closing down, shortening hours etc

Suzyh profile image
Suzyh

Hi I take my statin in a morning doc said it was ok. As I used to have awful nightmares

TeresaMay profile image
TeresaMay

I get little sleep. I have not linked it to Atorvastatin and I have taken statins for a long time.

Fynndog profile image
Fynndog

I had to stop taking them. I had cramps and numbness and burning in feet. I still took them for 18 months. I gradually went down physically. Weight dropping of me and I lost my arm muscle and my bum!

After a visit to doctor and a blood test , she rang me and told me to stop taking them I was about to develop something not very nice ( Rhab….. can’t remember it’s name)

Not everyone gets that abd most people can tolerate statins but some can’t so you need to check thus out with your doctor.

Of course the benefits of a statin if you can take them are very beneficial , I did try 3 different ones because I’m like you very compliant. I wouldn’t think of stopping them by myself I would always be guided by a doctor.

Good luck

Noodlesalad profile image
Noodlesalad in reply toFynndog

That's uncanny that you should have also experienced some of the same problems as I have. The burning feet and sensation of someone sticking sharp needles in the sole of my feet, perhaps I should mention them to my GP when I can get through for an appointment.Thank you so much for your response at least I don't feel as though I'm going mad now.

Fynndog profile image
Fynndog in reply toNoodlesalad

you are definitely not going mad. Your symptoms are very valid abd need to be noted. They may turn out to be something and nothing but you need to get some reassurance.

Wouldn’t like you to be statin intolerant or maybe one if the other meds is causing this.

Go through your meds paperwork abd see what contraindications there are maybe you’ll see your symptoms noted. You can also call BHF nurses they are brilliant. Tell them what you are experiencing and I’m sure you will get a very satisfactory reply.

Wishing you well

Xxxx

NannyPat1 profile image
NannyPat1

I take Rosuvastatin as Atorvastatin didn’t suit me either. On the packet it just says take at the same time of day so I take mine in the morning

Noodlesalad profile image
Noodlesalad in reply toNannyPat1

Thank you for your response as so many people have said the same 're speak to my GP so I believe if so many people advising the same I need to take note.

JeremiahObadiah profile image
JeremiahObadiah

I had not heard that about stopping statins. I hope you can now get the right levels of meds to keep your cholesterol and blood pressure ok whilst allowing you to sleep.

My sister said statins stopped her sleeping but I don’t think they have the same impact for me, sometimes I have poor sleep but on the whole I’m ok. Drugs obviously do different things to people and it’s really worth trying to get this sorted with the input and help of your Dr and pharmacist.

Noodlesalad profile image
Noodlesalad in reply toJeremiahObadiah

Thank you Jeremiah. I totally agree on different medications affect different people in different ways.I had never been allergic to Penicillin till last year (not that I have been prescribed penicillin very much at all in my life) it was prescribed for a longstanding sore throat after having Coronavirus. Within three days my lips throat and face were so swollen I could barely swallow.

So I have to take into account that clearly what once was ok and no problem for me may now be the opposite.

Wooodsie profile image
Wooodsie

Hi Noodlesalad, please DO take the statin, as Jenny R said, you can take it in the morning, my brother does, but I take mine at night. Of all the research I have done, quite extensive, statins are the most important (I'm no expert disclaimer 🤷‍♂️😂), but I have read a lot.

Noodlesalad profile image
Noodlesalad in reply toWooodsie

Thank you Woodsie for taking time to respond to my post. I have started taking my statins again but think maybe I have also not been well with a virus.

bludnut profile image
bludnut

Hi noodlesalad, I too take atorvastatin at night on the advice of my heart surgeon because it might interfere with Lansoprazole 15mg to prevent indegestion and stomach ulcers. However I do get leg cramps at times while in bed which I will ask about on my next appointment . Whether atorvastatin is the caise of this I have still to sort out.

bludnut

Noodlesalad profile image
Noodlesalad in reply tobludnut

Thank you for your response. I hope everything goes well at your next appointment.

bludnut profile image
bludnut in reply toNoodlesalad

Hi, what I forgot to say is that I am on 50mg Tramadol 2x /day for my arthritic pain ( Oesteoarthritis and Spondulosis) which may acount for my sometimes light sleep, and my waking two or three times a night. When the pain gets bad I take more Tramadol, which then causes me to be constipated, so I have to take lactulose twice a day. Life is sometimes funny, when you take medication to help with our ill health, and then we have to take further medication to aleviate symptoms from the ones that we are taking.

keep smiling,

bludnut

trash_panda profile image
trash_panda

Hi Noodlesalad,

It takes about 77 hours (3 days) for atorvastatin to be out of your system. Which means skipping alternate days will not have as much of an impact as you expect. It could be that the better sleep is a placebo effect? I would not recommend changing your dose or frequency without consulting the doctor first.

I've been on the maximum dose of Atorvastatin for 6+ years now (and Ezitimbe) without any adverse effects (I could just be lucky). Is there any other change you have had with your routine to accommodate taking your medication? Getting up to get some water etc? It could be that this is what is rousing you from your sleepiness?

Noodlesalad profile image
Noodlesalad in reply totrash_panda

I really can't pinpoint anything else it could be, and yes I had considered a placebo effect. I have started taking them again every day. I think at the moment I have some sort of virus, that is making me breathless on exertion and I am more tired than usual, plus feeling dizzy.Speaking to some of my friends over the last few days and either they or someone they know has also been under the weather, in fact one of them knows a couple of people with Covid.

Thank you for responding to my concerns. I really do appreciate anyone and everyone's input.

Robinface profile image
Robinface

hi it may be the increase in blood pressure medication rather than the dropping of the statin?? I had awful aches and pains when i tried to increase my bp meds and feet were sooo hot!!

Noodlesalad profile image
Noodlesalad in reply toRobinface

Hi RobinThat's a really good point actually. My cardiologist thinks I have had high blood pressure for many years and it not been treated so he thinks that's contributed to my coronary artery disease, probably was also a big contributing factor to my stage 3 kidney disease.

On the plus side it's all being taken care of now.

Smitty1956 profile image
Smitty1956

Hi, Noodlesalad,

I am about your age and I also take Atorvastatin, 40 mg. daily. Based on my personal experience, I would suggest that you might consider adjusting the time that you take this medication. The pill bottle does state to take this medication each evening.

I take my statin each evening at 6pm. I take it when I settle in to watch the evening news and usually having, or finishing dinner. Then, I can walk my dogs, or watch some evening television, or do whatever before bedtime. I find that I am then sleepy when I turn in for the night. To be honest, I usually don’t go to sleep before 1am, but that is just me. I usually also take 4 mg. of Tizanidine at bedtime. That is a mild muscle relaxer at a low dosage.

Like you, I have osteoarthritis, and it can be painful. I would suggest that you talk with your doctor about all of this before just stopping the statin. You are getting some specific health benefits from that medication, and it could be dangerous to simply stop taking it. You might find that your doctor might support taking the pill at an earlier time, such as 5-6 pm .

Best wishes to you in sorting out your sleep and medications. 😊

Noodlesalad profile image
Noodlesalad in reply toSmitty1956

Thank you Smitty I will also ask my GP about Tizanidine, and an wondering if that would also help with my muscles cramping up.I have started back on the statin as so many lovely people on this site say so long as you take them what time isn't important so I've been taking them mid morning.

I won't try for an appointment with my GP tomorrow as Monday is a very busy day for certainly my GP surgery so will start trying to get an appointment from Tuesday onwards.

I do appreciate all the replies from this wonderful community.

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