Suggestions/personal experiences with statins.

Iam64 When you see your GP ask him/her what the risk of a stroke/heart attack is when taking statins compared with not taking statins. I asked that question (prompted by a post on a previous discussion on this subject)

The answer, for me, was that taking statins to reduce my cholesterol to an 'acceptable' figure would reduce my risk of a heart attack/stroke by less than 3%, so it seemed pointless to start medicating myself for so little advantage.

Someone I knew was on statins for a long time. Towards the end, he could hardly walk from muscle pain and weakness. It's possible it was from his medication.

I think it will be different for everyone and, for me, the change in memory was instant. I had just been losing words here and there, but they were simple words like knife (as in Please pass me a ........?). It's a long long time ago now so it's hard to remember exactly (but not in a bad way).

It took a long time to associate the feet problems with the statins and it was really only when I got the correct treatment that I realised the timing was right. I think I was lucky.

If I can put my tuppence in, I think you have to follow through, even if coming off the statins doesn't work. There may be some other simple explanation and I remember the brain thing being very embarrassing but frightening. There are all sorts of things that can show up in blood tests and cholesterol shouldn't be the only thing they look at. Good luck to you Iam64. I hope we hear some better news from you very soon. I wish you a sympathetic GP.

Caledonail14, did you have any problems coming off the statins? How long before you felt yourself again?
Your point about not feeling able to function properly chimes with my feeling over the past couple of months. Brain fog, seriously aching thigh muscles, back pain I haven't had in years, low energy, not my usual cheery self and feeling very stiff at yoga/pilates classes. I'm a week clear of statins now and hoping things will improve.

I understood your post Iam64 and did not mean to sound as if I was reacting to it. The more of us who share the dilemmas and our own solutions, the better. At least we are treating each other with the respect we'd like to have from professionals and I like it best when GNers debate and inform without criticism as we are doing here.
I was - possibly clumsily - just sounding a note of caution to the silent readers of this forum, having realised my own actions may have encouraged others to come off the statins against advice.
I was in a very remote place at the time, hundreds of miles from the surgery and unable to function properly. By the time I got home I was off the statins and did not feel like going to the GP's partner for a further telling off and possibly more statins. It was a year before I felt safe to visit the surgery.

Definitely check with your provider before stopping statins.

Interestingly, statins were originally created because they help people with a specific genetic issue processing cholesterol. (We know now that high "bad" cholesterol actually has more to do with genetics than actual diet.)

*Important caution*: you may hear about a supplement called "red yeast rice" that may lower cholesterol. It has a similar chemical and side effect profile to statins and should NOT be used without checking with your provider FIRST.

All I can add is: thank god people are starting to wake up to the multi billion £ scam that is statins.
I've been banging on about this drug since 2006 when my cholesterol was 9.6.( still not much under that)
I spent hrs and hrs reading up on them. That's when I came to my conclusion, ie, it's a scam, but a very clever one perpetrated by drug companies.
When you've sat in a heart specialists office with your friend and he tells her to keep off the statins you know something is very wrong.

Caledonia, I have't stopped because of what people have said on this thread. I stopped because I'm not sure the costs and benefits of statins v no statins are worth it for me. I'll report back after discussing this with my (lovely if hard to see) gP

Please do not take drastic action with stopping statins just because of what any of us say here. Our individual experiences are just that and, in my case, I was trying to make the point about doctors not reporting back side effects when patients tell them.

I realise it's difficult to get appointments and that there seems to be a fresh push on statins, certainly in this part of Scotland. Currently, statins are saving the lives of close relatives with either previous heart problems or family histories, but doctors - and we - need to start being honest with each other and with the drug companies (and vice versa) about dangers of mass medication where there is any chance people are being made unwell.

Good luck to all those who are waiting for appointments. It seems ridiculous to have to wait til August if you know there are slots in July...and even that seems too long when most of us here are at an age where we don't tend to trouble doctors needlessly and time might just be of the essence.

My recent blood test showed cholesterol at 6, the highest it’s been, she said i have an 11% chance of a stroke and statins should be considered. I think the look on my face told her what I thought and she said no more.

DH has made GP appt to discuss-it’s not until 11/7, could be worse, initially receptionist had suggested August!! I knew there were appts in July as I’d checked it on the online booking system. DH not on that system so couldn’t book online, but he was able to say to receptionist that he was aware there were earlier appts.

Another question for you all-does anyone else’s surgery
have an in house pharmacist who not only reviews medication but prescribes where she feels it necessary? I’m not entirely sure I’m comfortable with this and wondered what others thought.

I stopped taking them a week ago. Still have brain fog, aching joints and muscles.
Will try and get a GP appointment. Current wait three weeks ?

I've been on statins for a while and have had to change a few times due to either side effects or not being effective. I;m now on rosuvastatin (crestor) and this is working fine for me. It's the last choice statin as it's new and therefore more expensive

My DH is on a high dose of statins with no apparent side effects.

Many years ago, my GP put me on increasing doses of statins because a blood test showed slightly high cholesterol. I developed terrible foot problems and started to feel as if I was suffering something serious because I kept blanking on simple words. I did not associate this with statins til my widowed dad and I went on a trip and he ended up looking after me instead of vice versa.

Meantime I got a message from the doc that my cholesterol wasn't shifting and I would be getting an add-on as soon as I returned home. In a flash of comprehension, I told the GP's partner by phone I wanted to try to stop the statins to see if that helped. He was furious and gave me a telling off and instructions to come in to the surgery without delay upon return. On no account was I to stop the statins.

I came off the statins.

The word blanking stopped right away.

My feet, in the end, took two years to go back to normal.

When I eventually told the GP I'd come off the statins and why, she laughed out loud and said she'd never heard of such a thing as statins causing memory problems.

Years on I still think if GPs believed - and passed on - more reports of serious side effects, even if they are not yet on the list, there'd be less mass prescribing of drugs which might be saving some lives (like DH's), but could wreck others (like mine if I had not rebelled).

One size does not fit all.

"If you have a cholesterol check, do ask what the cholesterol ratio is, rather than the total cholesterol. It is the ratio that is used in the risk checker www.qrisk.org/2017/. You can use this to work out your own risk, but try putting in different ages and see the difference. You can't change your age, and age alone is not enough reason to go on statins, whatever the drug companies (who do all the research) might say!"

Well said B9xchange
My (total) cholesterol is fairly high ( 7.4 or something, sometimes lower) - statins have never been suggested to me and I wouldn't take them if they were. I'm 65, I eat a really healthy diet ( although pretty low carb), not overweight, low BP, keep myself fit by gardening, walking and going to exercise classes, don't smoke, drink some alcohol but much less than the weekly limit - nothing more I can do. My ratio is fine - never accept any treatment based on total cholesterol - this is outmoded. I would do the Q risk score and take it from there - make changes to diet, body weight, exercise, smoking, alcohol if necessary first before medication. Oh yes and I'm on HRT keeps many of the other health blues away. Doc is quite happy - she says some people naturally have higher ch.

After watching a French/German TV programme on Statins: I learned that the French were not being diagnosed as needing statins and the doctors from both countries said they didn’t take them and didn’t intend to.
So that night both DH and I threw ours away.
On the TV programme they showed how much American pharmaceuticals were earning and how their earnings are still increasing.

Have been on Statins for years, but apart from nighmares no other side effects, nightmares were beginng to be a problem and my GP changed the tablets to Atorvastatin which I take in the mornings, but to be honest I still have vivid dreams. I am thinking of stopping taking them and see if my vivid dreams disappear, that would be wonderful.My cholesterol isnt that high, a pleasant nights sleep would be appreciated.

I was also.put on simvastin a year or two ago as my cholesterol was 'borderline'. After a while I had terrible itching day and night (couldnt sleep) -went to GP who said stop taking the statin. So I did and the itching stopped.
My cholersterol is still borderline (but they keep chaging the goal posts.) Every now and tgen it is suggested I might like to go on statins again. I say No thank you and so they say : wel, we'll review it next year! So far I've avoided it.

Hi I took statins for 6 months and my muscles got so weak I couldn't raise my arms above my head and my OH had to do up my bra.. I also felt so tired/weak and pretty poorly. Stopped taking them ( with drs agreement) but it took a year before I got my strength back; could raise my arms, do bra up, do crawl at swimming... never will I take them again! Hope your husband gets his worries sorted.

ARE GPs PAID FOR PATIENTS TAKING STATINS?
If you doubt this is true, please check this out on Google to reference an article in the Daily Telegraph. They receive all sorts of incentives.

Apologies if this has already been said as I haven’t read the whole thread: wind and bloating can be symptoms of coeliac disease, or sensitivity to wheat or gluten in particular. The latter can develop at age. A straightforward way of checking this out is for your husband to avoid eating any foods with gluten in for 1-2 weeks and see if the problem clears during this period. Hope this helps!

My GP put me onto Avrostatin a couple of years ago giving my age as the reason, I was 68 at the time. After a few months I suffered from dreadful aching legs and stopped taking them. It wasn’t picked up for about a year when the surgery rang to ask why I wasn’t ordering repeat prescriptions. I was then put onto 5mg Rosuvastatin and have been fine for about four months but now have aching legs again. So I am tempted to stop for a couple of weeks and see if there is any improvement. My cholesterol wasn’t excessively high but both DH and I think the GP’s have a thing about over 60’s and statins!

I have a number of auto immune conditions, including inflammatory (RA) arthritis. This is the main factor in my GP recommending I take statins. The cardiologist said he wouldn't medicate based on my cholesterol levels. My GP did the risk assessment and I'm very high risk, not to do with lifestyle, to do with RA which I've probably had since my mid 20s but was only diagnosed in my early 40's.
Without disease modifying drugs for the RA my quality of life was very poor. Yes, the drugs have potentially dire side effects. so does rampant RA which can affect all major organs.
If I didn't have these chronic health problems, I wouldn't take statins. I'm due to have a series of blood tests which should help confirm whether the statin are doing their job.. So far, I feel ok - but the costs and benefits of statins are a worry.

I think I'd rather take my chances with having a heart attack than be in constant pain.

Sometimes I wonder whether it is better to have a shorter life with relatively few ailments than to spend several years downing vast amounts of tablets and feeling absolutely dreadful.

My grandma died at the age of, I think, 78. I don't recall her ever having a day's illness until she had a stroke at the age of 78 and died within three weeks.

My granddad died at the age of 97, again with a fairly clear medical history apart from peritonitis and a motorcycle accident. Even in his nineties he took no medication and died over the course of one night.

But perhaps, when it comes down to it, most of us want to hang on to life even in the most difficult circumstances. Maybe I will be the same, who's to know.

DH has Type 2 diabetes, takes metformin and 1 glipizide, 1 aspirin + mental health medication. Until just over a year ago he was taking statins but after reading about side effects (Daily Telegraph/Dr James le Fanu) he stopped taking them. He's still alive, maybe a bit overweight. About 5-6 years ago my cholesterol was high but my GP didn't offer me statins in so many words, I said I'd control it by diet. I haven't been back to the surgery again so no idea what my cholesterol is but, like DH, I'm still alive. I'm comfortably within my weight range.