Iipitor Atorvastatin Knee pains

Treatment and medication
1

I am a 43 yr old male, I had a massive heart attack in August 2014. I have always been very active in my work but was a heavy smoker, did not have a good diet and did not exercise.

I had my wake up call in August and stopped smoking instantly I completely changed my diet and I am taking daily exercise, that is until the knee pains hit me.

I had a stent put into my artery and was put on many pills at hospital, I had no information about what pills I was on until I started to research the pains. Upon leaving hospital I was informed that I had to attend the cardiac rehab gym and to follow the booklet to increase my exercise to get to 30 mins per day. I could not wait to start after a very emotional shock like I had. I slowly built up to a good 45 min brisk walk twice a day and have been doing this for a few weeks, well until just over a week ago.

I was walking and suddenly felt pains in one knee cap and around it, I slowed the walk down and headed for home. I ice packed it and elevated it but it would not ease. I did not sleep very well that night through discomfort and in the morning the pain was terrible. I had doctors appointments and mentioned the pains and was told it was due to me being new to exercise. After a week of terrible pains in both knees, one worse than the other, numbness in my shin to foot and aches in my ankle. My partner said she had been told at work about statin side effects. I did a lot of research and found page after page of issues with knee pains due to statins. I spoke to my Doctor who said I had 2 options either start lowering my dose or start in a very low dose and build back up to the 80mg I was on. I got the low dose but I have not taken them for the last few days and the pain is starting to ease so much so that I was able to walk around the block yesterday although I suffered with knee cramps for the rest if the evening.

I also have been sent for many blood tests and a glucose test. The Doctor called me yesterday to inform me that I was now diabetic type 2. Luckily I had the Pill hand out in front of my at the time that states that blood sugars increase on Lipitor. My Doctor looked up in his reference book and said your right! I now have an appointment to see the diabetic nurse. I am not convinced that I am diabetic and I am going to request a re test in a months time after I have been off statins for a month.

Has anyone else been in this situation as I am a little worried about stopping medication but the pain is unbearable and I only seem to be getting information when I search 

my list of side effects on Lipitor so is severe knee and ankle pains, sleepless nights, aching gums

I have started taking COQ10 as I know this is stopped by statins I am also taking vitamin d and b12 plus omega 3,6 & 9 gel capsules

I am very shocked that more information is not given to patients regarding these drugs also the information in the professional field. I called the out of hours doctor over the weekend to find out what pain killers I could take to help the pain, the doctor did not agree that it was the statins she said she had never heard of pains in the knees etc and to take 2 paracetamol and go to bed!

The main points I have been told by every Doctor is to exercise but how can you when you can't bend you legs to even go upstairs due to pain from drugs supposed to help you

2

Hi Dave.  Very sorry to hear of your heart scare and so glad you're recovering and well done you for making lifestyle changes to help your health, not an easy task to change a lifetime's habits, big pat on the back to you.  I argued til l was blue in the face with my GP about the statins I was taking being the cause of really severe muscular issues.  Before starting to take them I had very good upper arm muscle tone as I go swimming a lot.  After three months on Simvastatin my biceps and triceps had withered to nothing and my upper arms were just bags of loose skin.  My doctor dismissed this as just 'age related' and excess weight (I'm only about 7lbs over 'ideal' weight!) I booked a private appointment with a sports therapist at my local pool who confirmed that I did have muscle wastage, not only in the arms but in the legs too.  The crunch came about a year or so into taking them, when I actually couldnt get out of bed one morning due to weakness and pain in my legs - scared the life out of me.  I flushed my remaining statins down the toilet that very day.  I also had liver issues and only found out I should have had regular liver enzyme tests but hadnt been told this.  I had an inflamed liver and was really quite ill.  The GP then prescribed Atorvastatin instead but after only a couple of weeks on this, the pains had come back. Again I dumped them and decided then that on balance the risks of permanent damage to my health and mobility outweighed any benefits to my cholesterol levels (the jury is still out on whether statins prevent heart disease in any case).  I really sympathise as in your circumstances, your risk level is so high that doctors will use scare tactics to push any drug they wish onto you knowing you haven't much choice.  You may wish to try taking Glucosamine with Chondroitin, which I've found excellent at reducing joint and muscle pain symptoms.  Do be assertive with your doctors re the statins, they will elect to prescribe a) the cheapest (ie off patent) first, then b) the ones they are support funded to prescribe and only as a last resort will they prescribe those which cost more but are ultimately less damaging.  You may like to research the following conditions which are all known to be caused by statins: Myositis - inflammation of the muscles, often exacerbated if fibrates are taken alongside statins; Elevated CPK (creatine kinase) - a muscle enzyme, which when elevated causes muscle pain; lastly and the most important - Rhabdomyolysis - extreme muscle inflammation and damage. With this condition, muscles all over the body become painful and weak. The severely damaged muscles release proteins into the blood that collect in the kidneys. The kidneys can become damaged trying to eliminate a large amount of muscle breakdown caused by statin use. This can ultimately lead to kidney failure or even death.  This latter complaint is said to be 'very rare' but it's amazing how many people report with just these symptoms and yet still statins are prescribed like giving out Smarties!  We all need to be far more vocal and assertive with our doctors, who are to be honest over prescribing these drugs because they're easy, tick boxes and bring in extra funds to the GP surgery bank accounts, with little or no thought about long term health damage to us, the patient.  Good luck Dave and I hope your recovery continues well. xx

 

3

You did not say why you were prescribed statins?

There was a very good reason for prescribing them for Dave though like him I opted for quality of life by stopping them. Exercise will do him more good than statins

4

Hi Derek. I had very high cholesterol - at 9, which I was told was familial, ie hereditary.  I have normal blood pressure and blood sugar levels, am otherwise fit and have a very healthy diet - (mostly vegetarian plus fish).  I also at the time of the blood tests was extremely active, swimming three times a week and generally otherwise healthy.  I am not so active now as am still recovering from the damage done by the statins.

5

Hi Loxie

Thank you for the information, I definitely won't be taking another statin. I will be stating the facts of my improvements to the Doctor on Wednesday

As I have not slept very much over the last few days I spent the time reading up on everything I could find including Patent information on Statins. This is the first time in my life that I have been on prescription medication apart from pain killers over the years and I am truly gob smacked by what I have read and the numbers of people suffering from the side effects.

As part if my rehabilitation I was offered councelling as many people who go through what I went through take the news badly and need some assistance but luckily for myself I took it as the kick up the rear that I needed and have after the first emotional hours following the stent procedure taken the positive route, as I mentioned to my surgeon I owe him my life and the only way I can think of repaying him is to get fit, stop smoking and eat a healthy diet, I also have a 2 yr old and a 6 yr old and the image I had in my mind at the time has given my this determination.

 I just wish that as part if the follow up conversations they would have explained the side effects as I like many others have had to hit the excruciating pain before the I found out.

today is the 4th day of not taking the Astorvastatin and although I am still in some pain it is about 50% less then it was last week 

I have had a blood test taken a couple of days ago for the Doctor to check my CK so I hope to discuss this with them at my appointment 

What I have found quite shocking is talking to a few people over the last couple of days most people are either on or know someone on statins and it sounds like virtually everyone has had an issue at one time or another with them so have changed dose or manufacturer. I feel that if a tablet can do what it's done to me in a matter of 5 weeks then what will it do long term? 

But fitness and healthy food is on my prescription now so much so that I have signed up to do a 10k run in September 2015 to raise a few quid for the hospital cardiology unit. That's my future goal another reason to get out morning and night to train along with swimming with the kids. But unfortunately I need to get this pain sorted so my partner has kindly said she will bring some of the Glocosamine you kindly mentioned home later to help

Thank you so much for your kind words and assistance it really has helped 

I am not trying to get donations please don't think that but I will be updating my just giving page ________ with info and images of the training and the event it's self and will be making reference to the statin issues I have experienced as a hope that it will help someone to get assistance early in in their treatment before they end up in this state

thanks once again

Dave

 

Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

6

Glucosamine helped my joints but gave me heartburn and I already had reflux. My wife tried it and she got heartburn as well.

With normal BP and blood sugar levels you have a lot in your favour. If only people could have a peek into their arteries to know they were clear. There is a CT scan you can have privately but it costs around £1,600.

I had aortic stenosis and had an angiogram prior to having the valve replaced two years ago. My arteries were clear so I cannot be persuaded that I need statins especially as I am 80. 

 

7

There is T2 diabetes and there is glucose intolerance. My blood sugar went down rapidly when stopping eating butterscotch the manuka honey I was taking for acid reflux. There is a glucose tolerance test that you can have.

My then GP said that we treat intolerance and T2 in the same way. I basically control it by diet but was prescribed Metformin another nasty drug that I stopped taking due to it's side effects.

The cardio rehab classes I went to (in Sussex) were a waste of time as they were very gentle exercises for people who had never walked or exercised in their lives or were disabled in some way and followed by a half hour brain washing session on the errors of our ways that landed us there.   I objected to that as aortic stenosis is not caused by lifestyle and I had been eating a healthy diet for thirty years and had stopped smoking tweny years before.

Amusingly after complaining about the easy exercises the statins and warfarin then affected my knees and hips and I stopped going afrer week twelve.

8

Yes it's a shame there is not a better early warning system for arteries, well there was I suppose but as it's summer and I was running around at work I did not think the sweating etc was anything but normal! 

I got myself a blood pressure machine and take my reading regularly I also have a pulse monitor I wear when exercising so I know when I push too hard and I can see that my pulse comes back down nicely, I just need a few months of this healthy eating and a nice pain free few months to get into a good exerts ice pattern. That's the biggest frustration you accept what's happened and what you have to do to make the right changes then something dispensed by a trained professional wipes you off your feet over night it's been 9 days since I had a good walk, I did my first yesterday but have been payed up since with excruciating pains in and below the knee cap and calfs.

not long now till I can get some Glucosamine in my system

I would never recommend statins to anyone, my father had issues with them my father in law is having issues which we just pinpointed to his statins, he's been suffering for a few months believing it was age related issues 

 

9

good for you Derek for approaching your health logically.  I was in my mid 50's when told of my exceptionally high cholesterol and was made to feel that without statins I wouldnt make 60 without a stroke or a heart attack.  The exact words were 'you're a stroke waiting to happen'.  I knew very little about them at the time and just accepted my GP's view as 'best advice'.  Since the health issues that resulted I've done a lot of exploring information and tried to find a balanced view - its a very emotive issue and there are extreme opinions on both sides, which I've tried to discount.  There does seem to be a corporate view, endorsed by NICE, that statins should be prescribed to anyone and everyone who may  (note the 'may' not 'will be'wink at risk at some point in the future due to family history.  GPs are actively encouraged and given funding grants to do so.  On the other hand, there is a body of professional and educated research that states there is no clear evidence that this blanket prescribing of statins if of true assistance in preventing heart disease of one kind or another and that conversely there is cliinical evidence that those who suffer vascular issues almost always have more than just high cholesterol as defining factors.  We, the patients, are piggy in the middle presently and are often left worrying ourselves into an early grave about what we should or shouldnt do to protect our health.  My friends are firmly split into two camps also.  One set telling me that statins are toxic poisons and I should run a mile, the others asking me if I really want to die young or worse survive a serious heart attack or stroke and live the remainder of my life severely incapacitated.  It would be nice if somewhere in the medical profession there were 'facts' that I could be appraised of without hidden agendas muddying the waters.

10

Dave - if you have a facility to do so, go swimming regularly.  Its great cardio exercise and very gentle on the joints as its non impact.  There are several heart patients at my local pool who gently walk back and forth in the shallow end for an hour a day and a couple of post bariatric surgery people who need the support from the water due to physical issues doing any form of impact exercise.  One chap of 90 with Alzheimers whose daughter took him actually became lucid enough to hold conversations and his GP stated it was the increased oxygen levels improved by the swimming that were  helping.  I have osteo arthritis in one ankle due to a major accident and now in both hands and cant jog at all or even walk far or do many gym exercises, but I can leisurely swim 30 - 40 lengths without any joint issues at all. The feel good factor is great too.

11

I had the glucose test done last week as my reading in blood were slightly raised, I got the call from the Doctor to tell me I had type 2 well he said I was very borderline T2, once he finished telling me that he had booked me in with the diabetics nurse etc I told him that I had the paperwork that comes with the tablets in front of me at it stated that the Statins cause a raised blood sugar reading and that I had read many Doctors make false diagnosis due to these readings, he them checked his book and said I was right so I still have to make the appointment on Wednesday but the Doctor asked me to take the paperwork with me to show her? 

I am going to request a glucose re test in a couple of weeks once the statins are well clear from my system.

I know exactly what you mean about Cardiac Rehab I have attended a couple so far and yes I could do all of this myself at my local Gym and save myself the hours drive and the fuel. I have asked if they can write a letter to allow my Gym to let me into the Gym as I pay membership but can't go in until I get the green light (insurance reasons) and I was told that I have to finish the course so I know how much to push myself. They just coughed and looked at me funny when I told them I started jogging, apparently I have to do 2 minutes peddling a bike for 6 weeks first along side squats and a step??? 

I know that I have eaten rubbish from burger vans and smoked way too many in my life, like I told them it was the kick in the rear I needed that's why I stopped smoking and stopped eating rubbish. I have eaten so much fish that I can now breath through my ears underwater. But yet they still insist in telling me how bad smoking is for me and fats even though I have not had a ciggy in month and a half

12

That's fantastic to hear, we love swimming. One of the first things I did when I left hospital was go to my local Gym and take out family membership. We now have unlimited gym for my partner and I plus unlimited swimming for all of us including the kids, we have managed twice a week so far over the last 3 weeks. I agree it feels great to swim and afterwards. My partner and I have always been worried about the nations obese children issues and luckily our boys are very active and love being outside so to get them swimming aswell is fantastic.

13

I use Google Alerts to seek out medical papers and news on Statins. I get a weekly E-Mail with links to the articles so I get both sides of the argument.

I also subscribe (free) to PULSE the GP's online magazine. That has a lot of articles on statins and doctors comments on the articles.

Of course my doctor takes statins and they don't affect his joints and he is running marathons in his late 50's 

14

Doctors asking patients to bring paperwork to show them?

It has more or less been me telling doctors things for years. The first was that I should not eat grapefruit when taking Verapamil. It was about a year before it was highlighted opn the label.

I was prescribed Amiodarone by a registrar cardiologist when already taking Warfarin. My INR went from 2.3 to 3.9 within ten days. The nurse at the warfarin clinic could not understand it and only fractionally reduced the warfarin dosage. Hardly any difference in my INR by the next week and again she only fractionally reduced the dosage.

I did some research and found that  Amiodarone affects INR levels and that when first prescribed it the warfarin dosage should be halved and then gradually increased.

I gave the printout to my GP who confessed he had not known that. The packet insert had no warning but the American one does. The doctor looked up the prescribing manual BNF. It did not spell it out and had a vague warning on how the liver deals with the drug.

I spoke to the pharmacist where I had got my prescription and suggested that she should have warned me. She said that my GP must have known but had forgotten. I also raised it with a different cardiologist at my next appointment, he just nodded.

When I stopped taking Warfarin last year a cardiologist said that I could be prescribed one of the new expensive anticoagulants. I said that they were contra indicated for patients with artificial valves. He looked up his BNF and said that two of them were but that the third one was OK. His junior chipped in that the third one was also contra indicated and he was forced to agree.

Last month I had yet another cardiologist who suggested that I should be taking one of the new anticoagulants. I said that they are contra indicated. Rubbish he said who told you that. I said that the one last year had agreed that they are. He looks at his BNF and disagreed and said that he would write to my GP to get him to prescribe it.

On my way home I went into the local pharmacy and asked the question.

She delved into books and said that they are contra indicated for those with prosthetic valves but she did not know what prosthetic meant!

I E-Mailed the three companies who make the drugs and they all confirmed that they are contra indicated. Game set and match to me. I look forward to presenting the E-Mails at my next GP and cardiology appointment.

The patient should not be the last line of defence.

A friend of mine was a keen hill walker and went out with a group every weekend and also up and down a local hill twice a week. When prescribed statins he was soon in difficulties but folowed doctors orders and soon his memory was also affected. Now he can hardly walk.

He did during that time stop amiodarone when his face and neck turned a blue/grey colour. He was wrongly told that he must take amiodarone for life after having a pacemaker fitted.

 

15

This would all be laughable if it wasn't our lives at risk.  We, the lucky few, are cognisant and able to challenge and determine facts.  What about those who cant?  Has our health service, once the envy of the globe really sunk so low that as Derek says, we have become the last line of defence?  I'm resigned to waiting weeks for an appointment, months for a hospital visit and prescription charges off the richter scale but I'm not at all tolerant that my actual life and future health should be at risk because of poor communication, lethargy and poor decisions made solely on the basis of cost and not viability.  Heaven help me if and when I get to a stage in life where I cannot argue for myself effectively, I have visions of sitting in a urine soaked chair in a soul-less local authority run facility, damaged beyond repair by having had the faith to believe my doctors when they prescribed me yet another bowl full of poison.  Better watch my stress levels whilst ranting here otherwise I'll raise my BP and get prescribed yet more toxins.

16

Remember the TV series Your Life in Their Hands?

A BBC TV documentary series on the subject of surgery, examining surgical practice from the point of view of both surgeons and patients in the late 50's.

It would be very different now.

Where does one begin with the problems facing hospital patients?

Long waits for initial appointments. Seen by different locums, assistant registrars at every visit. Some with a poor command of English and terrible note taking and errors in their letters to your GP. Often the letters would not get there if I didn't phone the secretary as I have not had my copy.

One time I phoned as I had not had a follow up after an X-Ray. I was told that I had dropped off the Radar. The same happened to my wife after a CT scan.

When I was referred with life threatening aortic stenosis it took five weeks to be seen. The consultant then wanted a stress echocardiogram and gave me a follow up appointment for seventeen weeks later and said to rearrange it if I had not had the test by then as it had a long waiting time.

About six weeks before the appointment I phoned to see when the echocardiogram would be. They did not have a date but the helpful person said that there had been a cancellation and would check to see if the doctor who would do it was still free for that date. Why did they not just give it to the next person on the list? I did not hear and phoned to be told that the person I had spoken to was on holiday. This other person would check for me. Next time I phoned I was told that the doctor was on holiday. I eventually got the appointment for four days before my appointment with the consultant. When seeing the consultant he had not been given the results and was unable to find the doctor who had done it. I gave him the facts as I had been told them. He then said that he needed to arrange for an angiogram. That was a seven week wait and I sat there from morning to 5pm before it was done by a registrar. When I had one years before it took ten minutes. This time it took fifty with the registrar having difficulties and asking for other sizes of catheters. Had he done one before? He was having difficulty getting the catheter round one bend and asked the nurse if she would do it. No way, she said. He decided that although he could not fully see round that artery that it was clear as the others were.

What now, I asked and he said that he would now refer me for valve replacement at the hospital that would be doing it. This was the end of October. I asked when. He said that it would be done before Christmas.

Not having heard anything by the end of November I phoned the hospital that would be doing the operation. They had no record of me. When I phoned the first hospital I am told that X is a bit behind with his paperwork. He had in fact gone oh holiday and the referral took another week. I was then told that the waiting time would be 12/13 weeks.  In fact it was not done until the end of May, fifty four weeks after my initial appointment.

I was fortunate in that my operation was done the day after admission. One patient was sent home that day as they could not fit him in. This happened on a daily basis one Guy lay on a trolley waiting to go to theatre while they phoned agencies in vain trying to get a theatre sister. Same happened to him the next day and he was sent home with an assurance that it would be done the following week.  

One man had his details taken by a Junior and had just got into bed when his surgeon came to tell him that he was cancelling it as he wanted to re-plan the procedure. He did not tell him that he had lost the last patient it had been performed on.

I must say though that the nursing staff were brilliant.

 

17

Just had the letter relating to my last cardiology appointment. His keenness to get to the bottom of my hypertension evidently waned and I have now been signed of by that hospital and left in the care of the Hypertension Centre in the next town. Probably for the better as I should always see the same consultant there as he is 'the clinic'

The consultant wanted a copy of the next 24 hour BP monitor results so that will not now happen so I will need to ask my GP to arrange to do it. He did of course tell my GP to prescribe one of the contra indicated anticoagulants.  

18

I've been talking to a friend about this discussion, having my usual 'rant' about poor treatment etc etc.  He has private medical insurance through his workplace and because of such is lucky enough to get an appointment almost overnight if needed, with the same consultant each and every time.  The last appointment they sat and discussed medication (he has high blood pressure, high cholesterol and high blood sugar), the subject of side effects, contra indications, etc., was raised and the consultant said he would go away and research very carefully a long list of drugs to ensure he was prescribed the best in his circumstances.  ......I as an NHS patient, having paid NI contributions non stop since I first started work some 40 odd years ago, can only dream of this level of care.  sad

19

Me to:-) I get cross when my GP checks on the price of what he is about to precribe. Several antibiotics did not help me and when prescribing another one he commented that it cost £27 for a weeks supply.

I mentioned this to the pharmacist who commented that I had more than paid for it during my working life.

I suggested thsat he thinks that I have had too much back in the last two years with a heart valve replacement, a prostate operation and cataract surgery.

I went for phsiotherapy (NHS) when having joint pain caused by warfarin. I asked the physio if hydrotherapy would help. He said that it

 would and he went to check with his supervisor as to when I could have it. He returned saying that I would need it three times a week but cost restrictions said that I was only entitled to one session a week.   

20

Dave and I and many others like us are put at serious permanent damage to our health purely it seems on the basis of 'cheapness' but literally millions are spent on the odd rare (albeit 'interesting'wink disease or revolutionary ground breaking treatment to aid a handful of patients.  We have the technology to replace almost every body part effectively with high tech and innovative solutions but we're still in the dark ages if we are prescribing outmoded drugs with known toxic side effects merely because there isnt enough money in the pot to analyse need and prescribe accordingly.  I'm not talking unproven or experimental methods or drugs here, just what is already available and tested but costs more or is ignored because it's 'easier' to not adopt beneficial change in prescribing practices.