Cannot tolerate statins, help please!

Bravo Jude!  I too now refuse to have my cholesterol checked anymore and there is no way on earth I'll ever take another drug to reduce it.  My current view is that regardless of what defective genes I've inherited, if I live a healthy lifestyle and am comfortable with it, then so be it.

Thanx Judexx

May I ask whether any of you stoppers of statins have had a heart attack?  Would you still say no to statins?  I've gone down from 40 mgs to 20 mgs with the help of a pill cutter as the doc wants me to stay on 40 mgs after a MI in May.  Should I try 10 mgs?

Thanks

Alex

I have not had any cardiac event and statins were prescribed for me purely as a result of a very high (at 9) level of cholesterol which is familial (ie hereditary).  If they had been prescribed alongside other heart medication following a stroke or heart attack I definitely would think differently.  

The connection between cholesterol and alzheimers is obviously still under review but studies are showing that  the differential between LDL (bad cholesterol) and HDL (good cholesterol) causes an increase in amyloid plaques in the brain which may link to alzheimers.  The same is true for stroke and heart incidents - ie high LDL and low HDL is 'bad' not just the overall cholesterol levels but rather the ratio of good to bad.

I most certainly did not have any cardiac incident prior to being prescribed statins.  I was not at all keen and indeed refused them for the first couple of months having seen what they had done to my husband.  How I wish I had stuck to my guns,

I was entirely healthy and a very fit 70-year-old - when I happened to mention to my GP that I was having occasional runs of atrial fibrillation.   At which point he went into overdrive  - changed my medication for my very mild and controlled hypertension and insisted I went onto warfarin and statins....or I would have a coronary or stroke!!!!

I refused the warfarin out of hand - and fortunately he agreed.  Sadly i eventually gave in to the statins

Since then I have continued to deteriorate... And I would certainly say NO to statins - even after a heart attack - they sure  did not help my husband.  Looking back on it - I wish I had stopped his statins but  ...as he was a retired GP...need I say more!

No, I have been of them for about a year now.

That is a shame - because I had severe atrial fibrillation and the cardiologist said "That is NOT a cardiac event, statins aren't actually essential in the context of stroke prevention, your BP needs managing to prevent longterm damage and anticoagulation."

I do take warfarin - because that DOES make a big difference in prevention of MI and stroke in a/f. It really isn't a big deal, we both attend the hospital once a month for blood to be taken and manage our doses pretty much ourselves - no dietary restrictions and no other problems. My husband is on warfarin because of protein C deficiency, discovered after he had a femoral DVT. I was offered one of the new super-anticoags recently but declined because the effect of warfarin is easy to reverse in the event of an accident. Loads of vit K seems preferable to repeated blood transfusions until you stop bleeding...

Statins after a cardiac event are another thing altogether - though the state I was in on 20mg atorvastatin it wouldn't have mattered. The constant pain and inability to walk would have made a swift death quite appealing after a while. Statins do SOMETHING to reduce future cardiovascular event risk - but it isn't because of reducing cholesterol. That is just a side-effect. 

And I know doctors who won't take statins ...

.... And who  will not prescribe them for any members of their family either!

Yes, I was first put on statins over 3 years ago after a heart attack and insertion of a stent, also beta blockers for a year.

I've been on every statin available from highest dose down to the lowest, also on a non statin cholesterol lowering drug, and they all give me side effects I'm not prepared to live with, especially not the depression and exhaustion.

I've been off them totally now for 3 or 4 months and I wouldn't go back on them for anything, life just worth living.

I'm taking 3 tsp of psyllium husks with my porridge (whole oats) most mornings and will have a cholesterol test in a few months to see if that's making any difference.  WARNING:  If you use this powder be careful not to take it dry as it can swell up in your throat and choke you, also not to take it within at least an hour of any medication as it can cause drugs to pass too quickly through your body.

I'll give an update on this site after I have another cholesterol test

I'm amazed that so many people (all UK?) on here are taking warfarin as my understanding in Australia is that it's hardly ever prescribed here any more because of the life-threatening side effects.

Does anyone know more about this?

LIFE-THREATENING SIDE EFFECTS?  Not half as life-threatening as untreated atrial fibrillation! 

Yes, if you are on warfarin and it isn't monitored and you are on too high a dose you could achieve an INR (measure of clotting) that would mean you could bleed to death after an accident. You are given a target INR value which depends on the reason you are on the warfarin and are checked regularly to make sure the dose is right. Too little and your blood will still clot, too much and you will bleed a lot. However, if you have an accident, it is easy to reverse - which isn't the case with the new-fangled anticoagulants. Both I and my husband are supposed to maintain our INR at between 2 and 3, occasionally it falls just below, once his has been above. We have it checked monthly - and have had no problems in 3 years for me, probably 8 years for him.

It may be - and I haven't looked to check here - that WARFARIN as such is no longer used in Australia. My husband was on warfarin in the UK and maybe they just use a generic name, so here in Italy has been switched to coumadin because he was perfectly happy on it and had no problems at all. I was initiated on Sintrom, a close relative of coumadin but different and what is normally used here. 

But life-threatening side effects can be found on pretty much every data sheet you care to show me. My friend was told by her GP to take regular doses of ibuprofen for arthritic type pain. After 3 doses she was in A&E with a gastric bleed - that was life-threatening. Aspirin can lead to life-threatening allergic reactions. Both are available OTC - no thought of the monitoring required for prescription-only warfarin. If you want to be stupid and take your dose without turning up every few months (as it is in the UK for people who are stable) for a finger-prick test then yes, it might turn out to be life-threatening if you hit your head or chop off a finger.

But in general? No, a risk worth living with to avoid the high chance of an MI or stroke due to atrial fibrillation.

But aren't there alternatives you don't have to monitor all the time because they're not as dangerous?

I wouldn't have thought ibuprofen would cause that type of incident unless she was taking it on an empty stomach?   and re aspirin, yeah of course it's dangerous if you're allergic to it, so are peanuts.   

I do think there's a risk with OTC items that people think they can't also be dangerous if not used properly, but then maybe they should just read the labels and/or insert sheets and inform themselves before they put medications into their bodies?

Answer, it is cheap for the NHS to prescribe compared to the newer drugs and the practice or whoever does the INR test gets around £10 each time. The practice I go to has 300 on Warfarin. 

I'd be grateful for any references on this:  googling "cholesterol altzheimers" brings up pages of contradictory information which I haven't had time or energy to analyse.   The study or studies which suggest high chol contributes to or causes A may well have been funded by statin manufacturers, who knows?  

If/when I can do more research I'll put it on here but in the meantime info from anyone else would be very welcome.    On what basis did yr GP husband suggest this connection?

She never took it on an empty stomach - all NSAIDs have the potential to cause gastric bleeding, even the ones that claim they are less irritant. Less is not the same as none. And while it is an OTC medication she was told by a GP to take it and he prescribed it, the 400mg tablets are prescription-only and coated. It doesn't matter whether they are prescription or OTC - NSAIDs are risk medications, all of them. Paracetamol is another - the difference between a safe dose and overdose is very small. Wash the dose down with a beer and you increase the strain on the liver. It isn't a nice way to die, believe me, and the window of opportunity for the antidote is very small. And with regard to your comment: you don't believe what I'm saying about ibuprofen do you, so why would you believe it written on a bit paper?

There are recently developed anticoagulants that are being marketed as not requiring monitoring. That was as a result of the clinical trials. As is always the case, now they are in much wider use they are beginning to identify people whose INR has shot into the stratosphere and who are bleeding badly when injured. If you increase the INR, the measure of how long it takes your blood to clot, you can bleed, it doesn't matter what the means is. As I said, warfarin and co may cause that but you can infuse a dose of vit K and the clotting mechanism is restored, the patient stops bleeding quite quickly. With these new drugs there is no antidote as yet - all you can do to stop a patient bleeding out is to transfuse normal blood until the concentration of the drug is reduced enough for clotting to occur. Just a few months ago it was agreed that maybe there should be monitoring of patients' INR when taking them, just in case. Which totally negates the USP of these new, expensive wonder-drugs: there is no need to monitor so it is more convenient for the patient and offsets their cost. I was offered them by my cardiologist, I refused, explaining why - and she was not only impressed I knew, she said she agreed with me.

This happens in Australia sometimes with new drugs before they're approved for the NHS subsidies, so maybe here the alternatives to warfarin have been approved and that's why it's largely been replaced.   I really don't know the reason, all I know is that my former GP commented to me that "no one prescribes Warfarin any more, it's too dangerous". 

How much wd the alternatives cost if you paid for them yourself privately?  Can you do that in the UK?   

I wasn't "disbelieving" you, merely asking for more info, because I wasn't aware NSAIDs were dangerous if taken with food.   I never had any problem with them and in fact wish I could still take them for my arthritis, but can't because I've been told that even the spray is dangerous for someone who's had a heart attack.

Re paracetemol, I've been prescribed one (which is also avail OTC) for osteo arthritis on the basis that I can take up to 8 a day, which seems far too many to me and I get enough pain relief from 2 in the morning and sometimes again in the evening.   I also find a particular (illegal) herb very helpful for pain.

Pradaxa costs over a £1 a tablet. You can get 28 5mg Warfarin for that.

Hmmm well that explains a lot.   Does any country in the world have a health care system where the best drugs are prescribed free?  Maybe in Scandinavia?

My GP tends to look at drug prices before he prescribes them. After having finished a course of antbiotics that had not helped he commented that the next one he was prescribing cost £25. Another time when I got to the pharmacy I found that the drug on the prescription was not the one he had said that he was going to prescribe as he had found a cheaper alternative.

Here with so many generic drugs pharmacists search out the cheapest usually foreign made version. One seldom gets the same one twice running and that of course helps the pharmacist profits.

Here doctors know that pharmacists will ask the patient if h/she objects to the cheaper generic substitute, to which I always say no, even though as a pensioner the price is the same for most scripts, but it costs the taxpayer less if people use the cheaper brands of the same drug.

NHS patients do not have such a privilege and it seems that doctors must prescribe the generic one. In England pensioners get free prescriptions.

People on government benefits in Australia get most prescribed medication for around $6 per script assuming it's been approved.   There's also a pharamaceutical safety net where after a certain number of scripts subsequent scripts are free up to end of that year.  I hit the safety net early in December last year, mainly because I'd been prescribed so many different statins and rejected each one in turn, but although it's helpful financially I'm hoping I don't get anywhere near it this year because I'm not taking anywhere near as much medication.

It doesn't matter where you are -  they aren't "free". We the consumer must pay in some ways.

I live in Italy - tax here is even higher than the UK but our local health service will use the more expensive drugs and I am prescribed Lodotra, a relatively expensive form of pred not given out in the UK, which costs me 2 euro for each script. However, I needed a fungal cream this week and although it was prescribed I had to pay the full cost which was probably 12 euros or more. The "paid for" list is quite restricted - anything other than the cheapest statin we pay for ourselves and believe me, the cost mounts up. Any treatment provided by the GP is free - except cortisone shots where you pay the drug cost, 20 euros per shot. Hospital treatment is also free but you pay 15 euros for a trip to A&E. That was to stop people using it as a substitute for the GP and to get a sticking plaster. It works. Austria has also had a policy of using the very expensive medications until very recently but they are now being restricted unless they really can show a major advantage. Because very often it isn't much - cancer drugs that the media get so uptight may give a few weeks more. Maybe. At a cost of £40K for a couple of months. 

Even in the USA you often have to contact the insurance company to get anything outside a pretty basic list approved. Before it can be prescribed at all - and in some cases the patient deteriorates a lot before approval is granted, or it may not be. It's a bit like having to contact your insurance to be allowed to get new wiper blades and still having to pay more than half the cost as a co-pay. Insurance can cost well in excess of $1000 per month per person and even then you have limits on what can be claimed, co-pays for all except the $4 list of drugs. Chronic sick often pay out tens of thousands of dollars a year in total.

Pharmacists by the way do not get the profits - it is all down to the prices paid to the manufacturing companies for the supply. The NHS actually negotiates bulk purchase discounts for many drugs and that often forces the costs down to keep their custom. The packs may APPEAR foreign but in the crazy world of drugs they may have been exported to distributors abroad and bought back cheaper than a UK distributor could match. Sometimes it must be the branded drug because the release mechanism is different - it depends. Some drugs simply aren't manufactured in the UK, incredible technology is required for some of the newer drugs still under licence and they come from the company who developed it, who have factories all over the place.

An antibiotic is an antibiotic - whoever made it and whatever name label is on it. The doctor prescribes it by substance name not by brand name and the pharmacist hands you this week's loss leader - you don't object in the supermarket, why here?

If patients used the drugs they were given instead of treating them as disposable - for example just one of the asthma inhalers my granddaughter needs costs £85 but many patients pick it up from the chemist, stick it in a drawer, don't use it and either it goes out of date or they lose it - so they go and demand another because it is free. To do just the same again.

When I lived in Germany I had insurance and medical care, in the end, was free. But I had to pay out first and reclaim it from the insurer. If I was in hospital they billed the insurer for me but I had to prove within 24 hours of admission that I was covered, you were never refused treatment as can happen in the USA if you can't pay up front.  I was fully aware of what every drug I had cost - and believe me, it can be quite sobering.

But the bottom line remains: there is no such thing as a free lunch. It all has to be paid somewhere. You pay higher tax and get such and such free and unlimited or you pay less tax and get a more restricted service or you don't pay tax to fund it - and it is like the shops: you can have what you are prepared to pay up front for.

xx

My dad had dementia, which got me worried too about a connection, As far as I know, no one ever mentioned high cholesterol but then again, not one mentioned their health problems in my days.