Possible side effects since moving on ... - Cholesterol Support

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Possible side effects since moving on to generic atorvastatin - continue or stop taking meds?

Fuzzer profile image
50 Replies

Hi everyone.

I only discovered Heart UK a few days ago, and have already received a wealth of useful diet information.

I'd like some advise regarding (possibly) coming off statins, I'll try to keep this as short and to the point as possible!

I'm 42, male, and have been taking Lipitor 20mg (atorvastatin) for around 6 years.

For around 3 months now, I've been experiencing very mild headaches, sometimes only for a few seconds. Sometimes, I also get a feeling of pressure in my head, particularly around my temples. I've got tinnitus in right ear, and sometimes feel as though I'm straining my eyes a little - symptoms I've not had before.

During this time, I've seen a doctor 4 times (my own GP once, the 4th time) and been fobbed-off with "It could be viral", "It's tension", etc.

At first I thought it might be sinus-related, but with no other symptoms of sinusitis at all, it seems unlikely (something the doctor actually agreed with).

After a bit of 'Googling', I noticed that there can be side-effects of taking statins, and upon reading the leaflet contained with my pills, sure enough 'headaches' and 'tinnitus' are possible side-effects.

I thought it a bit strange that I've never noticed any side effects before - and then realised that, at pretty much exactly the same time I started with these symptoms, my prescribed pills had changed from Lipitor to a gereric brand (as the patent expired).

I convinced myself that this was too much of a coincidence, and on Tuesday this week saw my doctor once again.

He was adamant that Lipitor and its gereric equivalent are, and I quote "absolutely identical, it's just the packaging that's different". I asked if I could go back onto Lipitor, and he basically said no.

I told him that I wanted to eliminate the statins as being the cause of my symptoms, so he changed my prescription to 40mg simvastatin (generic).

I came home and did some research on the internet, and found out that side-effects from statins are much, MUCH more commonplace than they would have you believe.

I decided to take things into my own hands and just go 'cold turkey', taking my last pill on Monday night.

I've missed Tuesday, Wednesday and Thursday, and yesterday, on Friday, I read an article that recommends you should taper off the medication if you're going to stop it! Whoops.

So, at 2pm yesterday I took one full tablet (of my 20mg generic atorvastatin).

I was planning on 'tapering off' these meds over the next few weeks (half a tablet each night for a week, quarter of a tablet each night the week after, then none at all).

Now after reading more information on the Heart UK website, I'm wondering if that would not be a sensible thing to do, and whether or not I should actually start taking the 40mg simvastatin I've now been prescribed.

I'm sure that my headaches were not bothering me at all yesterday during the day, but last night they started up again, and they're noticable again this morning (remember, I took a pill at 2pm yesterday).

To summarise:

Last 6 years: 20mg Lipitor

Last 3 months: 20mg generic atorvastatin, mild headaches, tinnitus, head pressure - side effects?

Monday: Took 20mg generic atorvastatin as normal

Tuesday: Saw doctor, was prescribed 40mg simvastatin BUT DID NOT TAKE STATINS

Wednesday: DID NOT TAKE STATINS

Thursday: DID NOT TAKE STATINS

Friday: Panicked a bit, took 20mg generic atorvastatin at 2pm

Saturday (today): ???

So, the advice I'm looking for, please;

(1) Is it possible that the generic atorvastatin pills HAVE caused these symptoms (do they sound familair to anyone)?

(2) Have I put my immediate health at risk by missing 3 tablets (before yesterday panicking and taking one!)?

(3) Should I now start taking the 40mg simvastatin? I'm reluctant because it's made by the same manufacturere as the generic 20mg atorvastatin which I think might be giving me side effects.

Starting on Tuesday, I also COMPLETELY changed my diet (after downloading Heart UK leaflets) - oats, soya, lots of fruit, veg, drinking lots of water. I'm committed to continuing this for as long as possible. Been feeling a bit light headed last few days, not sure if this is because I came off the statins or changed my diet so drastically.

Any advice will be very much received, thanks in advance.

(Sorry if the above post is a bit disjointed, currently trying to type this on the laptop as the kids are jumping up and down on the sofa!)

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50 Replies
sandrien profile image
sandrien

hi fuzzer,

Like you I'm merely a sufferer of lots of side effects of a statin (simvastatin 40mg). simvastatin and atorvastatin seem to be some of the worst of all regarding side effects.

1.I don't know. I do think the change to the generic atorvastatin might be a coincidence. but - what you experience as strange, getting problems by side effects suddenly after months or years is quite common. My body must have been damaged for about two years but then suddenly it was too much for muscles, organs and brains and problems showed up fullblown. So I think you might just suffer from Atoravastatin and not specifically from the new kind of the same thing you get.

I can advise you to contact the University in San Diego regarding adverse effects of statins. you might get information there and also eventually take part in their research regarding adverse statin effects. if you google you'll find their page and you can contact them.

2. I don't think so. I stopped simvastatin 40mg suddenly as soon as I understood the relation of all of my new problems and the relation with simvastatin. my muscles at least improved immedidately within days. from the day I stopped I felt better and better and I did not suffer from having stopped right away. my gp agreed on my choice the other day and did not recommend to slowly go down.

in this and also regarding you first question I would recommend you to contact Lipitor. As I experienced it the pharma might be helpful as long as you don't confront them with brain damage. Also tell them what else you do take (meds) so they can check whether you've been given a combination not lucky.

3. I just can tell you what I would do if I were you.

You think the statin has produced problems. you did not have those problems before. so I would like to know whether the problems (partially)diminish or go away after stopping the atorvastatin and for some time for sure NOT take any other statin. that would trouble your sight on questions you have.

I even would wait for all problems to go away until trying another. first heal then you can see further I'd say. Doctors often (while having little knowledge generally of statins!) prescribe the next in the row of statins immediately. I don';t think that's ok. first see whether it was the atorvastatin or whether eventually some other origin of the problems.

and to be honest... if your cholesterol is not VERY high I'd not at all take a statin if I were you but I'd look for other healthy ways (diet, sporting etc) to get the cholesterol a bit down.

read one of the books about the cholesterol myth and see for yourself what you believe and what you'd like to chose for. I'd never again chose for any other statin. i'm damaged so much and diverse not knowing whether I will fully get better one day. statins are tricky business, and especially THEY ARE BUSINESS!

And don't forget... your brain loves cholesterol.

I hope this helps a bit. don't worry about stopping and not taking a statin. I'd much more worry about taking a statin. i'm very happy without it at least knowing the problems produced will not get worse anymore and I very slowly heal a bit.

BTW... even if you don't feel there are problems... it takes some time until you feel... and then often it is too late. not all statin damage is reversible!

your heart muscle might be damaged whatsoever when you take statins. you might google for 'cardiomyopathy and statins' and see what you find... so...

good luck with finding out for yourself what's your way in this. I just told you what would be mine in this. for sure notstarting a new one until the problems the first statin has produced. if the next produces also probelms (often the case, especially if you don't go down in dosage; 20mg of atorvastatin is more or like the same as 40mg of simvastatin, so it's no relief on dosage!)you won't know waht comes from what. so I'd first try to heal and in the meantime do some reading and informing and then you can do the next step... another statin or none. I'd not at all step over to simvastatin which is the worst of all as far as I am informed. pravastatin might be a much better choice.

best wishes and I hope you'll get rid of the problems soon!

mugget profile image
mugget in reply tosandrien

After nearly 20 years on Atorvastatin 40mg I stopped (& told my doctor I stopped) and felt better ina few days. After 10 days my Doctor then put me onto Pravastatin and all the muscle pain returned within a week. Now taking nothing (although I've not told my doc.) for 6 weeks and seeing my diabetic doctor (who also runs our lipid clinic) in another 6 weeks - so I'll discuss with him.

Fuzzer profile image
Fuzzer

Hi Traci and Sandrien

Thanks for replying my original post.

No, I'm not seeing a consultant, and I think I may have been given poor advice by my doctor in the past.

I'm overweight (by about 3-4 stone) so I know this is a considerable factor and need to address it, however, when I was originally prescribed statins by my doctor, he told me that (a) there was no benefit in continuing to take plant sterol/stanol products (such as Benecol)and (b) (this is the best one) when I told him I intended to continue to eating healthy food options was told that because I was taking statins, I could eat pretty much what I wanted. I kid you not.

Sandrien, my reluctance to stop the statins 'cold turkey' is as a result of reading this article:

spacedoc.com/stopping_stati...

Not sure of the credibility of the article or the author, and from what I have been reading (including your comments), it seems that many people have just stopped taking statins using the 'cold turkey' method.

I'm not 100% sure that these symptoms ARE related to the statins, I just wanted to eliminate them, and the best way to do that did seem to try and stop taking them for a few weeks, at least.

It may be a coincidence, but today, after taking the 20mg atorvastatin (that I suspect could be causing me problems) at 2pm yesterday, I have intermittent throbbing on the top of my head, temples, back of my head. My neck feels slightly tight and a little bit numb.

Coincidence or (just one!) statin tablet?

Again, thanks for the welcome and replies, much apreciated.

Looking forward to being part of this online community.

Linpolio profile image
Linpolio in reply toFuzzer

My husband had a heart attack and stents fitted in December. He, like me, is a polio survivor and many report muscle pain with Statins. I knew they were going to say he had to start Statin so I asked a great pharmacy technician on the ward which would likely be least problem. He recommended Rosuvastatin but said hospital dont keep this you will have to get through your GP. Which we did. A month later he had pre op for second stent operation and I asked them to do cholesterol check when they did his bloods. It was 3.7, yes 3.7. Three weeks later it was 3.2. I found that the hospital had not got a cholesterol figure when he was in hospital for five days. After two months of increasing muscle pain to the extent of doubling his paracetamol a day and begging for co codamol. We dropped by half for a week and then stopped and within a few days he was back to his normal level of paracetamol and the muscle pains back to his normal. He also has Parkinsons with rigidity issues. Our Tesco does cholesterol check but I got machine that does blood glucose, cholesterol and urea. So now we know without having to ask or wait for gp appointment. It helps us.

Aliwally profile image
Aliwally

Hi Fuzzer and welcome,

I know that panic of stopping and then taking a tablet in a greater panic! It happened to me when I stopped taking fibrates cold turkey, then got in a terrible panic, took a Lipitor 10mg and gave myself a terrible cough. I think the moral of this is that statins are very much a long term medication and take a long time to get out of your system.

I have always stopped statins cold turkey, this is probably against medical best practice, but rosuvastatin gave me an asthma like cough and I just wanted rid of it. Incidentally the cough took about two weeks to go.

Was your cholesterol very high when you got put on statins? Could you lower it by other means.

I got side effects of pain and stiffness in my fingers after a year of Lipitor 10mg, this has almost completely disappeared now.

I don't know the answer to the generic atorvastatin. My mother in law always says she has a reaction when they try to change her branded blood pressure medication, but we have just thought she was making a fuss and didn't like getting a cheaper version, but maybe she is right.

Finally (!) there are alternatives to statins, I am trying Cholestagel, a bile acid sequestrant...just hope it works and I don't get any side effects.

moher profile image
moher in reply toAliwally

My husband took salofalk (obviously for a different medical issue) which was then swapped for the generic drug. he had a massive relapse and it transpires that he had a severe reaction to the filler used in the tablet. This can vary, also the coating,if any, can be an issue. Stick to your guns. My husband did and on using Salofalk again, recovered from symptoms.

shirazred profile image
shirazred in reply toAliwally

I think your mother in law may be right regarding her blood pressure meds I visit one set chemist who doesn't usually change the manufacturer and the last prescription I got my

Blood pressure meds were by a different company to usual within 48 hours I felt dreadful and continued to do so until the next prescription when I got the usual manufacturer

Fuzzer profile image
Fuzzer

Hi Aliwally

Thanks for the welcome and your reply. :)

My cholesterol was very high when I was put on statins, around 11 I think!

It seems to have been in check up until recently - I had a blood test when I first saw a doctor about these symptoms (ie, when I was taking the 'new' statins) which showed my cholesterol level was at 7, along with a few other blood anomalies and slightly raised blood pressure - something I've never had before.

Previous blood tests with Liptitor have never shown blood anomalies, chol level was between 5-6 and I've never had raised blood pressure in my life!

Aliwally profile image
Aliwally

Have you ever been referred to a lipid clinic? 11 is petty high and could indicate an inherited problem. Maybe you should get a definite diagnosis of your problem before stopping your statins.

I don't have FH ,and have a family history of muscle problems so my situation is different. Good luck with everything.

Fuzzer profile image
Fuzzer in reply toAliwally

Hi Aliwally

No, I've never been referred to a lipid clinic, I didn't even know there was such a thing.

My GP's on holiday now for a fortnight, I think. I could see another GP in the meantime and request to be referred to a clinic, perhaps?

I've stopped the statins to see if the headaches (et al) cease. Prior to July this year, I've had no symptoms that I'd consider to be side effects.

Possible FH was mentioned by my GP when I was initially prescribed the statins in 2006, but I've pretty much been given the meds, and that was it.

One good thing about this, is that I've been made to re-evaluate what I eat and drink. I need to lose a good 3 stone and change my diet forever. I'm feeling extremely positive about that, but still unhappy about these headaches (and other symptoms), and the thought of increasing risk to cardiovascular problems if I cease taking statins.

I'm hoping that I won't be putting myself at risk (either short or long term) if I come off statins for at least a week or two to see if these symptoms disappear/reduce?

Thanks again for your reply.

Robert787 profile image
Robert787

Hi Fuzzer, I was put on statins. After a month I could barely walk, the muscle pain was so bad.

Fortunatly my chemist spotted the statins in my pill selection (!) and suggested I go see my GP, the GP took me off statins for 2 weeks, (just like that). He changed them to rosuvastatin 5mg but 2 tabs a week. (1 on mon. 1 on Fri.) now I have only Very slight muscle aches.

So things can be done, you must push untill you feel OK with the meds.

all the best.

patch14 profile image
patch14

Hello Fuzzer, Welcome. I have always been statin sceptic. I am lucky that my cholesterol level has never been above 7 but have also been told to lose weight (my BMI is at the moment 24) and go vegetarian (my GP has an agenda here I think!).

DId you ask your GP for a breakdown of your figures to LDL and HDL cholesterol and your Lipid levels overall? All this info is grist to your mill when you come to discuss things with your GP. If you are not sure what the above means, Google them and get to know your cholesterol. It is your friend, not your enemy. It helps the body to heal, and I believe (personal thought here) that the rising levels of cholesterol in the body is an indication that it is trying to heal part of the body that you may be unaware is under stress. You say your blood pressure has risen a little, another indication. You say you are overweight. That, too could increase the cholesterol as it is helping the body to cope with the extra weight when the body is being carried around on your legs.

You seem to be trying to lose weight, but don't fall into the trap of starving yourself and making your headaches and light headedness worse. Just watch your carbohydrate intake, and definitely cut down on the sugar. Increase your protein, meat and fish, and increase pulses, (peas and beans) eat more vegetables and fruit (but watch the fruit, too much increases the sugar in the blood - eat the fruit not juices or smoothies - smoothies are awash with fruit sugars and are a definite nono when you are trying to lose weight.) Don't worry too much about your fat intake. That doesn't mean that you can eat fish and chips every day! but be sensible but if you fancy a good steak and a glass of wine one night, do it! Your Dr saying that you can "take the pill and stick to the old lifestyle" is an idiot!!!!!!!!! That is the mentality of many who see statins as the panacea for all ills, and do not ask the question "why do so many of us "need" statins?" We don't (and this is my opinion) we just need to get back to a diet of fresh food, away from the chemically induced diet that we seem to live on now, go organic if we can, (that is what our forefathers ate and they must have done OK or we wouldn't be here!) STRESS

I have given up all dairy, because of intolerance - just 18 months ago and am able now to eat a much healthier diet now than when I was suffering from IBS for over 20 years and the Dr would do nothing about it. Kept telling me to "exclude" things, and it became a problem with eating anything at all. Now, after going to a private clinic and getting the diagnosis of dairy intolerance I am much healthier, happier and have no more horrible side effects of IBS.

Exercise, of course, is a must. No, you don't need to go down to the gym and spend a fortune. You have children with lots of energy by the sound of it! Get them outside and take them for a long walk at the weekends. If you can, get out each evening and walk with a good pace for half an hour or so around your area. If you are lucky to live near a park or a wooded area go there. Don't treat it like an athlete in training. Take in your surroundings and gradually increase your distance. Thirty minutes each day is much better than 3 hours once a week. As you increase your distance you will find yourself going further in the same time, as your pace increases as you get fitter. I walk everywhere as I don't drive, and as I will be 60 next year I feel fitter than I did at 30!

in reply topatch14

Statins & fibrates didnt suit me...had to stop against advice, fibrates after 2 weeks. Had bad IBS, well abdominal pains for over 2 years, was given several medications but not told it was IBS. Eventually explained to coeliac uk by phone as needed help. Advised soya ,milk with calciom also lactose free.( doctor didnt agree ) but huge help.

Wasnt given any dietary advise, even coeliac clinic yearly didnt give advise re milk, just said stick to gluten free, which I always did as diagnosed coeliac 2007. Wondere how many others get dairy or lactose problems causing IBS.

patch14 profile image
patch14 in reply to

Hello Osborne nice to hear from a fellow sufferer of IBS. I know exactly what you mean. Drs do not recognise "intolerances" in food, only allergies. They like to see the physical signs, rashes, hot sweats, breathing difficulties, etc., the "low impact" as they see it, indications such as stomach cramps, flatulance, nausea, hot and cold sweats, and bloating are not seen as life changing but are, to those of us who suffer, life blighting!

I thought I had developed coeliac disease but by going privately to have a blood test for intolerances found that I could no longer tolerate dairy in any form (milk protein is my problem so no animal dairy for me at all) and a slight problem with yeast so I no longer eat bread of any kind. I still have a problem with whole grains so I don't eat them but keep to oat and oat bran which I seem to be able to tolerate. Rice and potatoes are OK as long as I don't have too much too often.

Since changing my diet I have not only found a relief that I haven't seen in 20 years, but my cholesterol HDL has improved, I have lost 7 lbs without trying and I have more energy, sleep better, and no longer have aches and pains in the joints or headaches. All this without drugs!!

Makes you think doesn't it?

sandrien profile image
sandrien

Hi Fuzzer,

" My GP's on holiday now for a fortnight, I think. I could see another GP in the meantime and request to be referred to a clinic, perhaps? "

Sounds like a good idea to me!

Yes, you wanna find out about whether atorvastatin is the reason of problems. therefore starting with a next statin right away as your doctor suggested does not seem at all a way to find out about that.

I think you're doing very well now going of the one statin and then just wait and see whether problems are reversible and not take any statin for at least some weeks/as long as you'r off all eventual sideeffects.

regarding the article on spacedoc: I'll read it. thank you.

I do think the site is very trustworthy.

I just said I did not slow down but went on ' cold turkey' - but I head heart and breathingproblems which did not make it logical to me to slow down. probably in general it is better but I wanted to let you know that having stopped 40mg of simvastatin at once did not harm me in any way. that was very ok. and I did so after having taken it for more than two years. probably it's also different whether you take it merely for weeks or months, for some years or many years.

i hope you'll find relief of your problems soon and I wish you lots of strength and wisdom and hopefully you'll find helpful literature and medical advice.

your' cholesterol is high and you're very motivated to go on diet. great! wish you lots of luck. trust especially in yourself! that was the best I ever did in this. i was happy i had too much damage any doctor ever even dared to advise any other statin to take. and from a specialist in statin related problems I was even strongly warned to ever take something being a statin or working alike (red yeast rice for example).

take good care and keep us updated please how you'r doing!

Aliwally profile image
Aliwally

I would go to another GP and ask to be referred. If you have FH it could have implications for your family. I am also a bit of a statin sceptic and think that they are over prescribed, but FH is a much more high risk condition that needs to be addressed. Good luck and let us know what happens.

Fuzzer profile image
Fuzzer

Hi Mugget, Robert787, Patch14, Sandrien, and Aliwally.

First of all, thanks for all taking the time the reply - I really appreciate your comments, advice and support - I think I'm going to make some good friends on here! :)

To be honest, I think I've probably had a lackadaisical attitude towards my elevated cholesterol up until this point - partially because I was under the impression that my prescribed statin was some wonder drug that would counter any amount of lager drinking, kebab eating, and exercise avoiding. I now know this to be untrue, of course, and I only have myself to blame for not changing my lifestyle sooner.

Patch14, I don't think I've ever been given a breakdown of my levels by my GP.

Today, I've had a 'numb' feeling across my forehead, temples and cheeks. I went to a local GP walk-in centre and saw a nurse, who said my blood pressure was OK, but at the 'higher end of OK'. Not sure if this is a reaction to coming off the statins. Like everyone on here, she advised me to make an appointment to see my GP.

My GP himself is on holiday, but tomorrow I'm going to my medical practice to make an appointment with another GP;

-Be referred to a lipids clinic

-Discuss coming off my statins for a couple of weeks to see if my symptoms go (I've only had one tablet since Monday)

-Ask for a blood test to be done

-Ask for the breakdown of levels of my last blood test

Anything else I need to ask/discuss while I'm in there?

Again, thanks for all your replies.

patch14 profile image
patch14

The two things that will start to "come down" when you begin to lose weight is your blood pressure and your cholesterol figures. If you change your diet to the suggested one I gave (or any other that you feel is more you) you you will find that your HDL "good" cholesterol figure will improve. All that without drugs!!

I know changing your lifestyle and incorporating exercise into your daily life can be a hassle and it takes some organising, but once you have a routine in your daily regime and your eating habits you will find that it becomes easierwith no side effects!!

All the very best to you and let us know how you get on at your next visit to your GP. Regards

Fuzzer profile image
Fuzzer

Hi all

Thanks again. Just a small update since I posted yesterday.

I suffer from insomnia quite badly - it's common for me to wake 4, 5 or 6 times a night, I'll go to the loo some of the times. I've never sought advice about this, and just accepted it as being 'me'.

Last night, I went to bed at around 11pm, and didn't wake until almost 4am (and that was to go to the loo). I woke a couple of times after that before getting up this morning, but I usually start waking up at midnight-1am (ish).

No sure if this is a one-off, or something to do with changing my diet / coming off statins.

That could just be down to a good night's sleep, of course, and coincidental, but something else happened yesterday evening that even my wife noticed before I mentioned it to her.

We usually sit down to watch a movie or TV in the evening, and, true in 'couch potato' style, I'll lie down on my side and prop myself up with my right arm. After 20-30 mins or so, I ALWAYS get a bit of a numb arm, and neck ache (for craning it at a silly angle, I guess) and have to 'reshuffle' myself into an upright position for a bit to 'de-ache' myself. I've just accepted this as being normal for someone of my age who sits/lies in an unusual position for a while without moving.

This didn't happen last night AT ALL. I lay on my side for well over an hour (maybe 80 minutes) before moving - and that was only to see how long I'd been lay down without getting uncomfortable. MY wife had noticed that I hadn't been 'fidgeting' throughout the movie.

Er, ok. So is this my diet, or have the statins been making my muscles ache after sitting/lying in certain positions?

Weird, and unexpected.

DakCB-UK profile image
DakCB-UK

I suspect the sleep disruption is Statins, but not sure about the fidgeting. I've not heard of that one before.

I had problems with one brand of generic Simvastatin, which I think was probably due to a non active ingredient, but that was something odd that isn't often associated with Statins: big, hard, semi-mobile lumps under my skin. With the help of my pharmacist, I switched brands. I think the co-op are better at accommodating that sorry of unusual request than boots.

Rueben profile image
Rueben

Hi again to everyone. What an excellent thread with lots of interesting answers and a mountain of personal experience to peruse. Statin threads always seem to get the keyboards alive. So important to share info in my opinion, especially when your life may depend upon it!

I must say though that in my own personal pursuit of keeping my chol level down and trying to sort my statin intolerance i am getting a little confused. There is so much useful information coming in from fellow sufferers i am finding difficulty doing a personal analysis of it. So many different statins, so many alternative remedies, so many different side effects and sadly, so many sufferers. I am no info analyst and as statins continue to fry my brain i find even more difficulty with figures and details and remembering them. I have always believed knowledge is paramount but you have got to be able to concentrate to get it and then be able to remember it! Has anybody found a way, or know of a way to analize all this info to make it simpler to understand? Categorise it , bullet point it etc.

Personally, i just wanna live a simple normal life(like i used to) for a normal length of time. My statin fight continues tomorrow when i visit my GP again, he insists adamantly on me taking statins! After trying various statins that have messed up my muscles or memory(or both) i am currently on Rosuvastatin(Crestor 20mg). I have a strict diet and takes loads of exercise which includes miles of walking. Well i USED TO walk miles until i started on Crestor. Since being on Crestor it feels like i have two permanently broken big toes and it limits my walking. I have had broken toes for real so i know exactly what that feels like and this feels like it!

I think i have now been on all the different statins except Pravastatin so i guess that will be my Gp's next suggestion. I will keep you all informed.

I hope no one sees any of my comments as negative but i just feel so damn confused by it all, like my brain is in a fog and the one thing you need in a crisis is a clear head.

Thank you everyone. I consider you all as friends.

Rueben profile image
Rueben in reply toRueben

Sorry....i forgot to mention, damn statins again i bet, that as well as either muscle or memory problems with various statins i have wicked dreams/nightmares on all statins. The dreams /nightmares i can put up with for the good of my health but the muscle/memory problems are intolerable.

Or maybe i am just paranoid and going insane. Yep, that is how bad it is.

Thanks again.

Withattitude profile image
Withattitude in reply toRueben

Hi Rueben,

Sounds horrible to be in that much pain. Have you tried seeing a different GP? The one you see sounds unsympathetic and when you are in pain you need someone to listen.

Aliwally profile image
Aliwally

Somebody else recently was saying about pain in their toes, but can't remember what statin. It's quite difficult to go back on this site sometimes and pick up a blog.

My nightmares on Simvastatin were horrible and very vivid.

I suppose, at the end of the day it's weighing up your particular risk and deciding if the side effects are worth it. I now have a "statin sceptic" GP who tells me he thinks they are over prescribed and the side effects played down. However, FH is a different ball game so to speak.

MumwithFH profile image
MumwithFH

I used to get pain in my big toes on 80mg of simvastatin but only in my thumbs now on 20mg simvastatin. All those years I thought it was early arthritis or RSI until I stopped taking statins for two years and all the symptoms stopped!

eliteness profile image
eliteness

I stopped taking my statins and felt great in just a few days,

Fuzzer profile image
Fuzzer in reply toeliteness

Hi eliteness

In what what ways did you feel better (or different) after stopping the statins?

Thanks

eliteness profile image
eliteness in reply toFuzzer

Hi Fuzzer, i will just say a little about myself first just to let you know why im on statins.

I'm 53 and already had 2 major heart attacks, non smoker, never been a drinker,weigh 9st at most, height 5ft 3, but do have a family history with heart disease.

My cholesterol is nice and low, but i am told that the statins can help keep my arteries soft to help with the blood flow to my heart. I was taking Lipitor 80mg one every day.

I started getting pains in my legs, buttocks, lower back, sleepless nights, every night, pains in my head, (i even began thinking i had a brain tumor) buzzing in my ears and a heavy feeling in my heart/chest. Within a few days i felt great, last night i had the best sleep ever, pain in the head has gone, pain in the lower body, almost gone and my heart feels lighter. I was reading about statins and found they cause muscle loss, well isn't the heart a muscle?.

What i have replaced my statins with is beetroot, 2 whole beetroots twice aday, (without vinegar) and i feel great, im peeing red (to put it mildly) but just for the aches and pains to stop, its worth it. I didn't ween my self off the statins, i just stopped altogether. I am now looking into other natural things, like a little rosemary tea is good for the blood, but beetroot has so many things in it that's good for you and its not nasty to eat, wishing you the best.

Fuzzer profile image
Fuzzer in reply toeliteness

Hi

Thanks for taking the time to reply.

The more I read about statins, the more I wonder exactly what I've been doing to my body for the last 6 years.

I've been off my tablets (generic atorvastatin) for 2 weeks now, and have noticed changes.

The headaches (which I attributed to the generic tablets, had no problems with Lipitor before that) have improved 70-80%.

Still have buzzing/tinnitus, not sure if that is anything to do with the statins or a coincidence. I wish it would stop, though.

I can now sit for long periods without getting aches.

I'm hoping things improve further, but am well aware that I need to stick to this healthy eating regime to get my cholesterol levels down NATURALLY!

eliteness profile image
eliteness in reply toFuzzer

HI and your welcome, its good to compare notes on the medication were taking, im all for doing things naturally now, there are so many good natural foods out there for us, best wishes.

Sonyajba profile image
Sonyajba in reply toFuzzer

Hi Fuzzer

Your symptoms are definitely side effect of statins, I had exact same thing,most dissapear once you stop taking statins but unfortunately 8 months of being statin free my tinnitus remains. I went cold turkey and felt better immediately.

Hi all

Just wanted to sound a word of caution to all those wanting to give up statins. Please be careful- if you have a life threatening condition and are at high risk of early and sudden death as a result, it may be that taking statins is the lesser of 2 evils and may save your life.

hairyfairy profile image
hairyfairy

I was prescribed Simvastatin by one of the doctors at my group practice, but I had to stop taking them because they made me very tired & sluggish, & when I ate anything I`d fall asleep. Another doctor at the practice told me that I shouldn`t have been on statins anyway as I don`t have any other risk factors for heart disease apart from slightly elevated cholesterol. I don`t know where to go from here.

Fuzzer profile image
Fuzzer

Hi friends.

An update.

So, 12 weeks after stopping statins and pursuing a very healthy diet, this is what has happened;

The good:

- I've lost a stone and a half in weight.

- My mild headaches/pressure have reduced considerably, but not completely.

Er, that's about it.

The bad:

- I still have tinnitus (being investigated now by an ENT consultant, awaiting MRI scan results)

- My cholesterol level is... wait for it... 9.3!

Every day, I've eaten the recommended amount of oats, drunk lots of water, eaten lots of fruit and veg, had plant sterols, Kyolic garlic and lecithin tablets, and every other day I've had a portion of 'oily fish'. Also had plenty of walnuts and blueberries.

I've cut down on my alcohol intake (hardly had any, to be honest).

I've had 3 'takeaways' in that time, 2 of which were actually quite healthy!

The result, I'm back on statins: 40mg Lipitor atorvastatin.

I took my first one last night, and today, I have a mild headache. (I've not had a 'proper' headache at all in the last 12 weeks.)

The last couple of weeks, I've also had palpitations and discomfort in my chest. I'm not sure if this is heart related (to do with stopping my statins), or something to do with stress/anxiety - I have had a quick ECG which was normal, my blood pressure is OK, and my GP does not think this is cardiovascular, but I'm not convinced! In the last 2 weeks I've dreamt twice that I was having a heart attack!

So, I'm going to give the Lipitor a try (at least the general consultant who prescribed them has got me back on the branded ones) and continue my healthy diet.

I still need to lose a good 2 stone. Very disappointed with my cholesterol level, I was really hoping the diet change would bring it down.

DrDoolittle profile image
DrDoolittle

I am 71 and had a heart attack in 2005, eight years ago. No previous symptoms, non-smoker, low blood pressure and cholestoral about 5.0.

On simvastatin until last year, moved to atoravastin as part of drug trial. Sleepless nights etc.but don't know if they are connected, as I can't remember which came first, the sleeplessness or the change of statins.

I have had one GP review when I questioned the need for all the pills- betablockers, asprin etc but GP was new and I felt he was playing safe.

I walk 5 miles with a group weekly, play bowls and have a reasonably healthy diet. I admit I am a little overweight but not breathless and have never had chest pain - apart from the heart attack. when I phoned an ambulance at 5am and had the attack in hospital - the best place to have one.

I would love to stop taking the pills. - advice?

naina123 profile image
naina123

i have the familial high cholesterol and on 40 mg. Atoravastatin for the last one year...and am depressed ever since! everything is blue, I have that sinking feeling in my stomach for ever and am too listless and tired to exercise! I am not that fat, 70 kg. and 54 years old. very active, I work and studying for my degree and normally a very positive person..lately I am thinking of killing myself...please help!!! I would love to stop taking the pills...

LoneWolf profile image
LoneWolf

Hi,

I have just started asking the question about generic brand Lipitor and stumbled across this site. I make no judgements, but let me tell my story.

I am a long term Lipitor user (approx 15 years) due to a

Family history of heart disease and being a smoker for most my life (recently stopped smoking).

I am a 51 year old woman, of a normal weight range... Sometimes considered too slim. I try to remain active and fit.

A few years ago I decided to alter my lifestyle and tried a time without Lipitor. This experiment worked well, until it became apparent that at that time in my life, I couldn't maintain the altered lifestyle, so I found myself back on Lipitor (about 12 months ago).

I was advised that the generic Lipitor was exactly the same as the Brand name, so thought I would give it a go.

In the past I had shown no apparent side effects from Lipitor.

Over the last twelve months I started to get aches and pains... From my hips down. Making it very difficult to walk most of the time.

Everyone, including the doctors, I spoke to said it was just my advancing age and I would probably just need to take osteo Panadol (painkiller) for the rest of my life.

I had three problems with that,

1. I still consider myself young and active, so being told advancing age was causing me pain, did not sit well

2. I had no desire to take osteo Panadol for the rest of my life for pain, that was really unidentified, and undiagnosed.

3. The osteo Panadol wasn't really taking the pain away, it was still a dull ache, so I would also take additional pain killers at times.

I decided to visit a physiotherapist for an alternative approach. He listened to my story and where my pain was and told me to go straight back to my doctor and talk about the Lipitor. He insisted that I continue to take the Lipitor until seen by my doctor.

That night I took my last generic brand Lipitor. That was nearly 4 weeks ago and I am happy to report that, most pain has now gone. I have not taken an osteo Panadol for about 5 days and I am starting to feel human again.

I didn't realise that I was feeling, so tired and drained as well as unable to move.

I don't know what was really happening here, but I will continue to monitor my pain (and cholesterol) and research if there is a link to side effects with generic Lipitor.

I am also hoping to live a life without medication for cholesterol, so any advise/stories with that would be appreciated.

Please remember though, that no one should stop taking medication without serious discussion with medical professionals and personal contemplation. No one else but you, knows your personal situation, and what works for one person may not work for others.

Hope my story helps.

LoneWolf profile image
LoneWolf

Thanks clanchatten.. Feeling better everyday. I have one daughter that is a dietician and the another that is a personal trainer, and I am a Reiki Practitioner, so I will give this drug free cholesterol control a good attempt ;-)

lilyrosedanby profile image
lilyrosedanby

Hi Fuzzer,

Yes this is very true, one of my family members is suffering from the same thing. Although she has taken her normal medicine for ages and then said generic because it was cheaper, guess what now... She's in a mental hospital as that was the side affect from the generic brand. So just watch out, you'll be fine.

eastridingbigden profile image
eastridingbigden

fuzzer its up to you but i came off simvastin a year ago and i am still here, after reading the side effects decided i would take the chance and I have occasionaly taken one at night and i have vrealised the next day not worth the pain in joints and a fuzzy brain so its up to you but to many people having problems with them cannot all be wrong

prs5590 profile image
prs5590

Hi I HAVE THE SAME SYMPTOMS. In reading your piece, i thought i wrote it.

I went to a whole grains/fruit/veg diet 1/1/14. then 6 days ago i went cold turkey. seeing my doctor in 6 days to get blood test.

quality of life realllllllyyyyy suffered

barron81 profile image
barron81

Find another doctor. After switching from lipitor to atorvastatin, I developed stomach cramps, gas, etc. I went to my doctor, who referred me to a specialist. I also had a CT scan which showed nothing. It was only though my own desperate research that I realized there might be a connection between my medication and condition. I called my doctor who admitted that yes, it was possible. He suggested I go off the statin for three weeks. It's been a week and a half and I feel much better. Even went to New Orleans last week where I ate my brains out with no dire consequences. I've had a few other puzzling physical issues lately that I'm sure are connected to this medicine. Guess it's not for everyone. Don't know if there's a substitute but I imagine I'll find out when my three weeks are up. Good luck...

donnabubbs profile image
donnabubbs in reply tobarron81

Searching online I'm glad that I found this forum. barron81 I can so relate... I' had my normal Lipitor presc. altered to a generic brand- atorvastatin few months ago, and since March (coincidence?) I've been dealing with daily stomach aches and flatulence and pain and gas trying to alleviate that with a 12 hr acid reducer which does help but shouldn't be used long term. It started off viciously in March with belching so bad...then stopped and went into daily pain a few hours after I ate. I've basically been wheat/sugar/gluten free for about a year or more and eat minimal dairy but it didn't really matter what I ate, the pain would come. Other than meat. That never has caused it. So I decided to research this in the last few days with more focus on the drugs I'm taking and seeing this forum is a relief to me. 3 yrs ago after a month of this... and a scope, ultra sound, bloodwork the internist only said it might be acid. After I'd altered my diet to be close to gluten free, I noticed an improvement. He found nothing in my stomach. Now I'm thinking my body is/was reacting to either this Lipitoratorvastatin or a combo of this and the Atacad that I've been on. I decided not to take the lipitor today and see my GP on Tuesday to discuss this. SO fed up with daily stomach/gas pain so anything is worth a try. I have a family history of diabetes and heart attacks and I know I'm walking a thin line but I cannot handle the daily stomach pain anymore. It's become so debilitating and hopefully my Dr. and I can find something else to help me.

sld82060 profile image
sld82060

Last year, my doctor put me on Simvastin, but she had to take me off of it because I developed hives, and all over feeling of bugs crawling on me. She told me to watch my diet. I never did go back on Simvastin because I needed a hysterectomy to remove an ovarian tumor. Three weeks ago, I finally saw my Primary Care doc again, and as I expected, my cholesterol was high. She sent paperwork into my insurance company for approval to prescribe the Crestor. It was denied. She then called in a prescription for Atorvastin 10mg. I've been taking it for 2 weeks now, and have noticed severe pain in my leg and arm muscles. I, too, went on the internet to find out the side effects of not just this, but other cholesterol drugs, and they all say, "can cause severe muscle pain in patients also taking thyroid medication". I wanted to go through the roof as my doctor has also put me on Levothyroxine 0.05mg for hypotheroid!! With that, I've made the decision to go cold turkey on the cholesterol meds. I have a family history of high cholesterol, and no meds is going to change that (they never worked for my dad, or my brother, in lowering their cholesterol). I seriously think doctors (and pharmacists, too) need to go back to school to learn, in-depth, the severe, and common side effects of medications and what they can do to a patient...it might save our lives more than the meds they prescribe for us!!

sandybrown profile image
sandybrown in reply tosld82060

Every medication do have their side effect!, statin side effect has been discussed on this site by many people. Cholesterol high? what is the number?

If you are not taking statin, please consider life style change, watch you food intake and go for regular exercise, you may feel fitter and enjoy life to the full.

This is the first time I have read about an insurance company has been asked for approval on medication! "Do the insurance company have qualified people to address the medication?"

Crestor it was denied. She then called in a prescription for Atorvastin 10mg, was the latter approved by the insurance company?

Good luck.

bmango profile image
bmango

Hi, I too have been on atorvastatin 40 mg for several months and am now experiencing tinnitus in my left ear, soreness behind my left ear and soreness behind my right ear but no tinnitus there yet. I have NEVER had tinnitus before and am very upset and annoyed by it. I was surprised to see that there is indeed a connection between this medication and tinnitus. Yet my doctor has never mentioned that to me as a possibility and instead is proceeding to treat me as if I have a totally unrelated illness of my ears. That may be the case, but I am stopping the atorvastatin in the mean time to see if my symptoms begin to resolve at some point. I have read that simvastatin and provastatin are both better statins in terms of side effects and plan on switching to one of them ASAP since going off statins is really not a safe option for me at this point.

donna83015 profile image
donna83015

I would highly recommend watching your tube clip youtube.com/watch?v=XykVFMd...

Ndmedia12 profile image
Ndmedia12

Hi I've had three heart attacks and was on 80mg atorvastatin the pain in my muscles was unbearable after two years I managed to persuade my gp to reduce it to 40mg all this time my cholesterol was 4.7 did not move, after a short while started getting pain again in muscles so managed to get my dose down to 20mg, been on statins now for 4 years and recently started getting problems with really bad stomach pain, my IBS got much worse and went to gp and was told to try stopping my statin for a couple of weeks and then to start that one up again and try stopping my omoprazole, I had started slimming world so my diet has totally changed had blood tests and my cholestoral is now 3.7, and I stopped taking the statin last Monday a week ago, result almost straight away 90% of my stomach pain has gone, so it's side effects are more far reaching than first thought! and I am ok, so if you need to stop taking it to rule it out for any medical reasons don't be afraid try it and see, Jan

Shubhra-Rastogi profile image
Shubhra-Rastogi

As far as Statins are concerned you these are safe for most of the people, but there are differences between the different statins. Which statin is safe for you depends on a variety of factors. Some statins are safer than the others depending on the other medical conditions you might have. Statins are known to have drug interactions with other medications. There might be side effects as well which are mostly tolerated well by most people. But if you find a side effect too troublesome then inform your GP. Side effects vary between the different statins.

The common side effects which affect 1 in 10 people are sore throat, bleeding of nose, headache, blocked or runny nose, digestive system problems (such as constipation, flatulence, indigestion and diarrhea), muscle pain, increased risk of blood sugar level and diabetes.

The uncommon side effects which affect 1 in 100 people are loss of appetite, insomnia, dizziness, blurred vision, hepatitis, pancreatitis, acne and feeling of constant tiredness.

The rare side effects of statins which affect 1 in 1000 people are jaundice, bruising or bleeding easily and visual disturbances.

sandylo profile image
sandylo

I stopped taking simvastatin a few years ago without my docs consent went cold turkey was fine but now 8 years on had blood test and cholestral is higher but I'm also older!! He's now put me back on a different tablet today will take first one tonight also my vitamin d is very poor so put me on a new capsul which you take once a month just taken the first one onwards and upwards I hope as was feeling very depressed and bones and joints terrible pain which is mainly the side effects of letrozole which I take for breast cancer just hoping I can get a little better as can't walk above fifty yards with the pain

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