Getting really cheesed off now - British Heart Fou...

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Getting really cheesed off now

Outoftheblues profile image

Came off Atorvastatin (80mg) a while ago due to getting pretty bad muscle aches and struggling to maintain my training. GP put me on Rosuvastatin 40mg and after 2 days was getting banging headaches, nausea and stomach cramps. After a week I couldn't stand it any longer and took myself off it (after chopping the last few in half) and spoke to GP again, advised to try Simvastatin, same thing but even worse after only 2 days on 20 mg, felt awful. Spoke to pharmacist and after a good long chat I went back onto 40mg Atorvastatin starting last Thursday. Felt progressively tired over the weekend and went out for a 10K training run this morning, felt absolutely bloody awful, legs like lead and was glad to get back home and have felt worn out ever since. Seriously thinking of coming off it altogether for a while it is really starting to get me down. Anyone else been on this treadmill? I am sure the GP is going to run out of options soon.

54 Replies

Hello

Just a question are you possibly over training and that is leading to the fatigue ? Don't know your other Medication/or Heart Condition but could they be contributing ??

What is your 10k training time and if you don't mind me asking what category are you in age wise like 45/50 etc. Looks like you have exhausted the Statin options and you possibly need to look at a Professional Trainer to discuss your regime !!!

I am just trying to be Constructive are you in a Running Club or such and training with others ?

Regards

I am pretty sure I am not over-training. When I took myself off the usual 80mg of Atorvastatin for 2 weeks I actually felt like a new man particularly when running, and afterwards. Similar ups and downs while trialling the two alternatives. I am 64 in September usually do a 10K in 55-56 mins but had to jack in after 8k this morning and have felt like i've been through a mangle all day. I am pretty sure at this stage it is not down to the training I have been running most of my life and know the ropes as it were, run 3 to 5 times a week. Not sure what other statin options are available but I am not prepared to stop running under any circumstances.

I was on Atorvastatin 80mg, really upset my stomach and my liver function went through the roof, Doctor changed me to a lower dose of simvastatin however liver function still to high. Now been told to stop until further notice.

I was taken off all statins because they were causing liver damage. I was referred to the hospital endocrinologist to find an alternative despite my cholesterol being low. My appointment was cancelled March 2020 and blood tests ok so I’m not worried about not taking statins. I find my legs ache if I don’t exercise enough and if I exercise too much the knack is to find the right balance. Hope you find the right balance soon.

Well the thing is at this stage of my training I know for sure I should have been able to do the 10k easily, I was only planning on doing a steady 58 mins run which I am well able to do. Following going back on the Atorvastatin since Thursday I felt as if I was running through treacle, and this is a repeating pattern lately while on/off different statins.

Outoftheblues

It seems to me you have a life style choice to make on the assumption that you actually need to continue taking drugs, in particular statins, to reduce your cholesterol to satisfy your cardiologist or prescribing health person, and also perhaps yourself. If you are getting enhanced side effects through running you may have to curtail that, to reduce the muscle side effect of the statins and make your life easier, but on the other hand, you could take the decision to stop taking statins and continue running and enjoy it ache free whilst you are still physically fit enough to do it and accept the potential risk to your heart health. The choice is yours. Unfortunately having health issues , especially in later life, brings with it the possibility of having to make these choices to balance managing your well being against continuing to enjoy life as much as possible whilst you can.

Very philosophical reply, can't say any more really, it's how I feel basically! Unfortunately those of us in this club just to accept the fact we are.

Hi outoftheblues. Not sure if you have come across the use of Ezetimibe or Colesevelam (a bile sequestrant, suggested by my lipid consultant)? Atorvastatin 80mg caused liver function readings to go off the chart. So put on these as a different approach to lowering cholesterol without standard statins. Liver function now ok, but cholesterol rising too high.My new gp has kept me on Ezetimibe, dropped the Colesevelam and put me on 5mg of rosuvastatin. LFT tests every 4 weeks and cho!esterol test in 3 months.

The GP has already said the lipid consultant will be "piss** off" , but I am keen to lower my cholesterol, not keep the specialist happy. I have given it a good try - titrating up from 1 to 4 tablets a day - but after a year no improvement.

This was my experience, though, so have a look at these if you are interested.

Good luck in finding that elusive balance between good health and a good life !x

Thank you for your reply I am going to have a serious chat with my GP soon.

I'm not medically qualified, so I can't comment on your medication. But are you aware of Inclisiran?

nice.org.uk/news/article/ni...

I believe the BHF were instrumental in the development of this very recent drug. I seem to recall from a recent BHF documentary (try searching YouTube) that it's chiefly for people diagnosed to be carrying the Familial Hypercholesterolaemia gene, but perhaps it's also relevant for you?

Final point, have you (along with your GP) investigated much smaller statin doses, perhaps that's an option? The reason I mention it is because if I were in your position I'd be loath to abandon statins completely.

We only have two tools to try and slow down the progress of our atherosclerosis, medication and life style. Stenting and bypass surgery may buy us some time and grant us a second chance, but it's medication and life style changes that does the real work of keeping us safe. It sounds like you're already covering off the obvious life style stuff, so that only leaves two options from your current regime. Smaller doses if you can't stand full doses, and casting the life style net much wider to look at less common things like gum disease, sleep apnea, zero alcohol, zero processed foods, glucose spikes, HbA1c scores, etc, etc.

Sorry, I can't be more helpful, I'm trying to walk the tightrope between no medical qualifications yet sharing some real life experience with you in facing similar dillemas.

Good luck!

Thank you for your detailed and (as far as I am concerned) informed response, as usual. Well, I will be having a cat with my GP, obviously - I say my GP sadly the one I saw initially who was fantastic now seems somewhat inaccessible but I am going to try and get an appointment with him, to discuss the options including alternatives to Statins. As you say I am also very loath to abandon Statins completely, because as you say we don't have too many arrows in out quivers really, I totally accept that I am on my second chance. However as you say I have modified my lifestyle quite a lot particularly diet. I did have a period in my life between about 52 ish up until my "event" at 60 when I had cut down on exercise quite a lot from what I had been doing most of my life (only hiking really no running/cycling) and was certainly eating too much saturated fat (cheese and butter for example) so not sure if this was when the atherosclerosis really started to take over or if it was just a linear progression. Certainly as far as exercise is concerned now, my re-incarnated running is a big part of my life and I firmly believe it will help me in many ways, maybe as much as taking statins might. Regarding the doses, between you and me I have been experimenting with the Atorvastatin, chopping the 80mg in half and also taking the 40mg bit every other day (just being honest here and not encouraging others to do it) and I have to say it doesn't seem to make a lot of difference so far. The two alternatives I was on didn't seem to cause the muscle aches but I felt as if I had a permanent hangover, not very conducive to exercising! Maybe 20mg might help. Interesting about the other lifestyle choices - I have had Gum disease all my life. Not sure just how much this might affect things, I know there are links but not sure what I can do about it if anything. It is pretty much under control due to very regular visits to the hygienist and have had in depth work done in hospital in the past. Don't eat any processed food to speak of and never really have. I do like a drink but not sure how much of an impact this may have, or what difference zero alcohol might make? It does not seem to figure very highly in a lot of research or advice really. My HbA1c levels have always been fine.Anyway thanks again, it is a tightrope! I suppose at the end of the day it just is what it is, I do consider myself very lucky to still be here and to be in decent shape heart wise, we all have to just try and enjoy what years we have left as best we can really.

This is a really tricky one. I'm not qualified to give medical advice, but let me share some experience that may be relevant to you.

Even though I live in the UK I'm a Canadian citizen. When I realised I needed bypass surgery I looked into care options in Canada and the US as well as the UK. Just over the US border from my home town of Vancouver is the Bale Doneen heart clinic which enjoys a good international reputation. I've not been, but I may go there in the future. I understand their view is that statins are critical for heart treatment, they recognise that some people really struggle with statins, but they'll push really hard to find types of statin and doses that can be tolerated, even if this means 5 or 10mg just once or twice per week.

Like I say, I'm not qualified to give medical advice, but do some research on Bale Doneen, one of them wrote a book on heart attacks that is available in the UK. Their view is that abandoning statins should be the absolute final step, and there are many interim options before you get there.

Good luck!

Thanks for that I will. I really don't want to come off them altogether, certainly permanently, I will see what the GP has to say. I am quite prepared to come off them for a month just to see how I feel and then work from there on smaller doses and maybe not daily either. Bye the way might I be cheeky and ask what you thought of the levels I gave in this post? As a layman, obviously :)

Mater123 profile image
Mater123 in reply to Chappychap

Hi good morning ..does him disease affect the heart. I asked my dentist and was told no but a friend said it does.And sleep apnea too ?

And what is HB1a olease ?

thank you so much

Chappychap profile image
Chappychap in reply to Mater123

It's disappointing that your dentist isn't aware of the connection between gum disease and heart disease, here's a video from the BHF (who sponsor this forum) explaining this well established link,

bhf.org.uk/informationsuppo...

And here's an article from the UK's Heart Research Institute detailing how sleep apnea relates to heart disease,

hriuk.org/health/learn/risk...

I understand that people with sleep apnea are up to five times more likely than the general population to develop heart disease. In fact it's not just sleep apnea, any sleep related disturbance increases the risk of heart disease. For example it's well known that people on shift work have a higher risk of heart attacks. For many years I did an international job that involved a great deal of long haul flights, resulting in near constant low level jet lag, I suspect this was one of the life style triggers for my own heart disease.

Your final question was about HbA1c. This is one of the blood tests that should be performed annually on everyone who has had a heart attack, stroke, or has had a heart related surgery...so most people on this forum.

HbA1c gives a measure of your average glucose level for the past two or three months, and is considered an early warning for Type 2 Diabetes and Insulin Resistance. It's something I can personally relate to, my own HbA1c results were technically in the safe zone, but blood tests over many years before my heart problems showed they were steadily increasing, until they were right on the edge of qualifying as "Insulin resistant". Many GP's wouldn't have bothered mentioning this, but I was fortunate to have a GP who takes a special interest in heart patients. His view was this trend towards Insulin Resistance was a primary cause of my heart disease. The great tragedy for many people on this forum was that high or increasing HbA1c scores are so easily treatable. For most people just getting your weight down is all that's needed to deliver safe HbA1c results. I wasn't obese, as a big, fairly muscular guy I could easily carry a couple of extra stones without looking fat, seen against the terrifying obesity of modern Britain I never thought of my weight as problematic. But the hard fact is I was still too heavy and my weight was killing me Shedding that extra stone or two, and keeping the weight off, has been transformational.

I suspect many, many people on this forum are in a similar position, so I hope my experience can help them. We can't ever "cure" our heart disease, but with some well targeted life style changes (along with our medication) many of us, probably the great majority of us, can slow the progress of our atherosclerosis to an absolute crawl.

Good luck!

Mater123 profile image
Mater123 in reply to Chappychap

Hi Thank you so much for taking the time to give me such an informative response. I am so pleased to finally understand all of the above.

You have e planned to me so clearly information that I hVe been trying to get for a long time .

You are amazing.

Wishing you well .

Kind regards

Laura

Ps sorry I took so long to respond ....kids ...always running around

Ezetimibe is an alternative for people not ok on statin. I take both & am ok but I know they prescribe either separately too. Best to speak to GP but you could research before- knowledge is power…

LowerField profile image
LowerField in reply to Gail1967

'Knowledge is power'? Maybe so, but the old saying 'A little bit of knowledge is dangerous' can also apply; some of the posts on this forum are testament to that.

Gail1967 profile image
Gail1967 in reply to LowerField

I don’t take everything I read as truth- I always do more research- seek out facts from BHF & Heart UK & of course check with GP or heart specialist - so yeah agree it’s what you do with that knowledge

Carercmb profile image
Carercmb in reply to LowerField

I agree we can exchange stories but not experts in the field .It takes time for our bodies to adjust.Maybe you need longer to get the balance .

I have similar symptoms on the same medication and the pharmacist yesterday said to continue and review again in a weeks time.

I initially rejected the idea of a lifelong medication but decided to accept some side effects for the chance of living longer.Individual choices for all.

Thank you for replying, I was actually on Atorvastatin for 3 1/2 years before I started to get these problems. GP has suggested it is not particularly unusual. I suffered banging headaches for 10 days while on Rosuvastatin, we also dais of It had not gone away after that time it probably never would.

I thought your first response was better! I have to say I think all posts so far have been very helpful and not very dangerous, we are better armed with as much knowledge as we can be, as Gail has said

Dear you,

Well this is a hard one to answer and really I’m not in any position to do so. I do feel for you and the magnificent way that you have not only dealt with your own problems but have had the time to help others {me included} on here.

You are not a stupid man and you know your body very well, so when you say that such and such a drug has affected you in a certain way, I know that you would not have posted that thought without it being so.

But what can I do to help? I cannot tell you to go against medical advice because I am being a good boy and following all that has been chucked at me, so it would make me a hypocrite, which I’m sure you have already guessed I’m hopefully am not.

You are a little bit onward with your journey and when I get there I will be looking {like you} at everything to improve the quality of my life and not so much its longevity.

I have a few more stages to go first, but thats not me dragging my feet, thats me {bites his lips} just going along with the science until I am released from their grip { something that I realise does not happen to us all}

So on this new drug {for me} Entresto they have halved my astrovistatin , 80 to 40, and I felt the effects very quickly, not so heavy legged etc etc.

So if just doing that can have such a positive affect then what else? But thats a lesson for me a little {and I mean a little} further on.

You take care and just continue being you as best as you can be, whatever that takes.

Thank you. As you say this has been going on quite a while now and I am very confident that they are causing me these problems. You don't get midway into a training plan and then suddenly distances and times you were doing easily become out of your reach for no reason, some days it feels like my legs have literally been run over by a tractor. Soon as I come of them, I'm fine. I will just have to see what the GP can come up with.Anyway hope you are doing OK thanks for replying in the circumstances.

I was on atorvastatin 80mg at the beginning. Terrible leg aches, so GP changed it to 5 mg Rosuvastatin . No probs since other than lazy bowels but that could be losartan . I recently had a cholesterol check , down from 7.2 to 4.3 in 3 months so something is working! I have changed my lifestyle too though it has to be said ..Hope you feel better soon

As others have said, congratulations for continuing to do what you love. I am in a similar situation regarding statins, at least on the liver function side. I am also a cyclist, so I know the feeling of running out of energy at a point much earlier than we used to!

I am really hoping that I can stay on high doses of statins, as seeing those low cholesterol numbers on my blood tests makes me happy. But then again I don't want liver failure!

My own choice, assuming liver issues aren't trending toward serious, would be to stay on high statin doses and deal with having less energy. But I also understand the notion that you want to enjoy life while you can.

I'm sure this isn't particularly helpful, but I just wanted to express solidarity and understanding. Good luck with whatever you choose.

Thank you. I used to do a bit of cycling with a group of mates, ended up getting dropped far too regularly and packed it in but that was in my early 50's and now I probably know why! As has been said it is a balance, obviously you don't want liver failure, but also it's no good dying of a HA with a brilliant liver. Anyway keep the wheels spinning!

Despite acceptable cholesterol levels I was put on Atorvastatin 40mg after a stroke. Subsequently I developed hip and wrist pain, something I've never suffered with. I've been doing yoga for over 25 years so joints quite supple. I know stations have other beneficial effects for the heart so I asked my doctor if I could reduce the dose & see how it affected me. So far on 20mg I've been pain free and still getting the heart benefits. HTH

I have a mate who does a lot of weight training and he is also down to 20mg for the same reason.

At my last blood test about a month ago my cholesterol level was around 2!

Just out of interest in case any one has any comments these are my lipid levels from a period a couple of years ago when I was not taking Statins but concentrating on a strictly plant based diet for about 6 weeks.

Triglyceride/HDL ratio 0.62

LDL cholesterol 2.59

Non HDL 3.1

HDL 1.81

total cholesterol 4.91

Trigliceride 1.12

Tot cholesterol to HDL ratio 2.71

I don't think they are too bad anyway?

From what I understand, it's more than just cholesterol numbers when you're on statins. There is evidence that they can stabilize plaque from the bad "soft" kind to the less-bad "hard" kind.

Yep, I know, I do a lot of DIY research as well. I am not entirely convinced to be honest, but it is a nice thought. Also the fact that some peoples plaques are more likely to rupture or break off than others. Thing that gives me hope is that for maybe 40 years I would have had fairly extensive atherosclerosis with near total blockage of LAD but no HA just eventual Angina from blood starvation, obviously not on statins all that time, so maybe mine are stable, who knows! Or maybe I was just lucky.

Hi I tried all and like you bad headaches eye.I now take Atorvastation 80mg and realkt goid for cholesterol but !! crippled with pain and muscles are so weak ..legs like lead .

still on 80mg

at the my it's I've chosen statin over bring pain free.

but what a choice !!!

very hard decision

I wish you the best of luck

Hi Outoftheblues

I had the same problems as you. I felt like I needed hip, knee & shoulder replacements.

My legs felt like they were weighed down with lead and I puffed. I couldn’t stand the quality of life Atorvastatin was giving me, I could even walk properly.

My GP agreed it was the 60mg, I came off them for 8 weeks, my body went back to normal and I didn’t hurt anymore.

My GP & Pharmacist agreed to 20mg to see how my body reacted. For the first time in history my cholesterol level went down to 5. Cholesterol at level 5, I was at 11 then 7. Our family have Livers that make too much Bad cholesterol.

Heart attack, life saving Quadruple Bypass and now cholesterol at 5 - I’m happy with that and I can even run now.

You are not imagining it, the statin is the cause but it is needed.

I am 62. I had the same reaction to 3 statins. Severe muscle aches.Had to hold onto furniture for support. I was put on Repatha. My prescription is in the form similar to epi pen. I take it once every 2 weeks. My cholesterol is best it has ever been and no leg/muscle pain. Good luck to you !

That is very interesting thank you.

Hi Ootb. Until last summer I was on 40mg Atorvastatin, and had piled on weight since my HA and my lower legs & feet were constantly aching. With my GP's knowledge (if not quite approval), I stopped taking them completely, lost 8lbs in the first month and another 4lbs over the next 3 months. My legs stopped aching, although my feet still "burn". GP then persuaded me to start a low dose of 5mg Rosuvastatin (equivalent to 10mg Atorva), and over the next 2 months I put 8lb back on and felt constantly tired. Fortunately no change in my legs.

I went back to GP to discuss it. As my cholesterol has never been particularly high (4.6 at the time of my HA, around 3.1 now), GP wants me to continue taking some amount to avoid build up of plaque, even if it's 1 tablet a week. As a compromise, I'm currently taking 2 x 5mg Rosuva per week. Feet still burning, talking to cardiometabolic clinic about weight loss.

Thanks for your thoughts. I have had a peculiar tingling sensation ever since my stents were fitted, it comes and goes, mostly in arms and lower legs and in cold weather. Could be meds, could be related to CHD, who knows, just seems a bit coincidental. I think I may end up taking them in some form of reduced manner, I don't want to come off them completely.

After 80mg of atorvastatin my liver functions went off the charts, liver biopsy and now yearly liver scans. I am now on ezetimibe but have noticed that the cholesterol is slowly creeping up, so will see whar happens next. I have adverse reaction to statins on my gp notes now.

If you don't mind me asking what is your cholesterol level now you are off them?

I went down to 2.2 as cardiologist wanted under 2 but now back upto 4 something.

Wow under 2 is a big ask isn't it? Is this total cholesterol or LDL?

Total cholesterol.

Wow that was a high starting dose. Please don't just come off it; work with your GP. There are still alternatives.

When I came out of hospital my GP at the time said "wow they have put you on a very aggressive statin dose" (80mg Atorvastatin). He then said it was because i was young (60 at the time) and we would have to see how things went. At least I managed to go 3 1/2 years on it without problems.

I would think these level would be very difficult to achieve in the majority of people? where did you obtain this information from if you don't mind me asking?

I will have a better look later but to be honest as soon as I see the word "Reversal" I go into suspicious mode. This is never mentioned in UK based articles as far as I am aware because basically it can't be reversed, sadly. The levels you mention from it are not particularly low, however, in fact well within my results when I was not even on Statins. I do have to say I am generally wary of US based material, maybe that's just me!

Thanks I will give it butchers in more detail later.

You say your cardiologist has set a target for you, which is quite steep. Could I ask what your heart disease is, and why you have been set this target? I am also interested in the description "my cardiologist", which suggests to me you may have some particular challenges? I think very many people only see a cardiologist fleetingly while in hospital and that's it, I certainly did.

This article is very interesting but I have to say I find it rather disconnected with what actually happens in reality. For my particular situation, I am sure getting my LDL-C level down as far as possible is indeed a great idea, but if it makes my life either miserable or even painful then it is of little value. The only way of getting these low values would entail an aggressive statin dose as a starting point, which it is beginning to look as if I cannot tolerate, along with many other people. I think there are probably many other factors for me to take into account as well, such as the type of plaque I might have, and what my actual risk of a secondary event is. Unfortunately it is impossible to discover this while I am still breathing! At the end of the day I think you just have to be philosophical about it and accept that you just have to do what you can do and hope for the best. If that means I have to drop my dose down until my legs stop feeling like a bus has gone over them, or I don't have a headache all day, then so be it.

Ah yes think you commented previously, we sound pretty similar then, I too have 50% RCA and LAD was 97% blocked. I also am BMI 22 Pescatarian plenty of vigorous exercise blood pressure always OK etc, we must have come off the same production line. My LDL was 2.59 prior to event (I assume, that is what it went up to after 6 weeks with no Statins although that was on a plant based diet). When on 80mg Atorvastatin it went down to anything between 1.19 to 1.8. I never see much reference to Triglycerides alone on this forum, I understood they were also very important, mine have always been low, 0.8 ish mostly. In my opinion you should take some comfort going forward from the fact that, like me, you did not have a HA. As you say see where the journey takes us.

I have been on Atorvastatin 80 mg then 20mg over the last 2and a half years since stent put in. Recently I started suffering from the leaden legs syndrom (thoughts of running impossible.) Reading the contraindications on Atorvastatin, I spoke to the doc saying I suspected the statin was causing the leg problem. So he said stop taking it during May, which I have done. I still have a little leg stiffness - especially after getting up from a seat or out of bed but nothing like the feeling I had before. I await to see how I am by the end of the month.

Hi All,

If you are experiencing side effects that are affecting your daily life, then you should speak to a GP about seeing what alternatives are available. Do not alter a dose without speaking to your GP first to ensure it is safe for you to do so.

You may wish to get your bloods checked as well to ensure there is nothing else that could be causing your symptoms. This would also help you and your GP come to an agreement of how to manage your condition.

Thanks all, and have a lovely day

Ruth (BHF Nurse)

🙂

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