My Statin Story - Read The Introduction First

[moaningminnie]

In 2005 I had two major hip replacements with complications (one a revisionary of old 1960 osteotomy operations) but was discharged on 22 December 2005. It had been a slow recovery from such a trauma but I was doing well and walking without crutches. Just a few months following the operations I was put on 20mg Lipitor/statins in April 2006 before I had even started a rehabilitation programme in a gym to build up muscles and stamina again. My metabolism was poor and I had become slightly overweight because of the long hospitalisation and inactivity. My GP did a blood test and said my cholesterol was too high 6.8, or thereabouts, and said I needed to be on statins for life and if I didn't take the drug I would have a heart attack. I was very shocked to learn I had a new ‘disease’ that needed ‘treatment’ - for life… I was given no warning about any health risks from taking statins and nothing was said about diet and starting a rehabilitation exercise programme.

Six months later I saw another GP (in the same practice) and I said I felt exhausted all the time with constant muscle pains and had a very dry mouth needing to drink water very frequently. By then I had developed twitching and jerking in the thoracic upper back muscles and neck. I said I thought it was the statins, or I might be diabetic, with these symptoms and wanted to come off the drug for a three months trial. After three months she said I wasn’t diabetic but the cholesterol level had gone up again and coerced me back onto the drug. But again, I was never warned of any serious risks associated with statins, or asked anything about my family medical history regarding muscle disorders.

The symptoms worsened. I became extremely intolerant to bright light and the eye watering/tearing was so bad I could hardly see to drive and I felt 'nervy' and dizzy. Getting meals and doing the smallest tasks was like climbing Everest. I had diarrhoea and was constantly passing water. After two or three hours sleep I needed to get up through the night to drink again and pass water. By morning I was too exhausted to function normally with debilitating muscle aches and pains. Socialising became impossible. By 2007 I was so concerned about the profound muscle weakness, and twitching and jerking in the upper back and neck muscles disrupting my sleep, together with the severe eye problems, I asked for a brain scan. The upper back, neck and breathing muscles became so rigid after over exertion I sometimes had (and still have) feelings of near panic before going to sleep. To force the muscles and brain to relax I have to cover my eyes and put hot pads on the back of my neck, upper back and front. The brain scan results came back normal – ‘nothing to worry about’ I was told - apart from the relatively mild/moderate pre-existing congenital brain damage.

By early 2008 I began experiencing severe arrhythmia - the first time ever - with difficulty breathing during weekly hydrotherapy sessions and had to stop going. I also had to stop going to a rehabilitation gym twice a week. No GP had offered information about these exercise programmes - I had to ask. Unable to do these activities anymore I was becoming more and more isolated and depressed. I also felt too exhausted to drive far, so one evening in March 2008, I was a passenger in a car with some friends and felt so ill/weak I could hardly talk with a horrendous stabbing pain in my upper back. My voice pitch had also changed. I couldn't cope with noise, music playing and people talking, and I had difficulty writing. The fine motor skills had been affected and the following morning I made the very first urgent/emergency phone call to speak to a doctor on telephone duty. My then registered GP phoned back and told me to come in the same day. Before I went I checked on the internet for the first time about any dangers associated with statins and I could hardly believe what I was reading and hearing - 'Statins and ALS-like syndrome' - I definitely had these symptoms.

Through The People’s Pharmacy website I heard Dr Ralph Edwards, Director of the Drug Monitoring Centre of the World Health Organisation talk about his research on hundreds of other ‘Statins and ALS-like syndrome’ reported cases. The GP dismissed it. He ordered a blood test and a week later I was told to come off the statins and referred me to a cardiologist (not local) for the very first time. I wasn’t told then my cholesterol level had gone down dangerously low to 4.0mmol/L. I saw the cardiologist in April and was told the heart rate would settle down to normal at night having stopped the statins. No follow-up appointment was offered. I wasn’t warned of the dangers of quitting the drug. I began making more emergency GP visits but still my concerns were ignored. By May, on a Saturday morning, I had a mini-stroke with excruciating pain in my upper back muscles, shoulders, left side of neck that caused sudden weakness in my left arm and throat making it difficult to swallow. I was terrified but I didn't call A&E because I knew no one would listen and believe me. I reported this to the senior partner I met in the street and he said: “Call A&E next time” and that was it. Soon after that he put three local anaesthetic injections into the damaged back muscles to remove a wart on my back (caused by the statins?) and the agonising pain made me cry. I wasn’t given an option to have it frozen off because of the serious statin side-effects. I then made another emergency phone call followed by a same day GP visit and asked to see the cardiologist’s letter that was on his desk but I was refused to see and discuss the letter. Patients have to see whichever GP is on duty when making emergency same day appointments.

Immediately following a pre-booked GP appointment in June I became extremely ill and housebound. A community nurse visited me and wrote in a record “…Rhabdomyolysis (known muscle wasting) and cardiomyopathy. Has many side-effects from statins. GP and specialist fully aware of her situation”. She never returned and I was left to cope alone. I believe the GPs told her not to return and are guilty of wilful neglect. At night I had red hot burning, tingling legs and feet with severe extremes in body temperature - dangerously low or high. I called A&E twice with heart palpitations and racing but was never admitted to hospital. One night I had excruciating leg and foot cramps with frightening incoordination unable to walk without the aid of a crutch. I had constant stabbing/pricking pains with nocturnal twitching and jerking in upper back and neck muscles (myoclonus), nausea, dry mouth, diarrhoea, loss of appetite, loss of hair, droopy eyelids, eye tearing, dry skin on hands like crepe paper, shiny skin on legs that bled when shaved, foggy brain/confusion and suicidal thoughts. After another emergency same day phone call I was prescribed an opiate drug over the phone for the diarrhoea but I became deaf in the left ear on the side of my head where I had the mini-stroke, so I stopped it after three tablets, and to my enormous relief, my hearing returned. A paid helper took me to A&E but a doctor told me the heat intolerance was possibly a thyroid problem and I was fobbed off - yet again. This arrogant doctor said condescendingly: “I prescribe statins everyday” implying they must be safe and was completely in denial of my ADR report and refused to listen.

On an emergency home visit from the GP, who had prescribed the statins, I suffered one and a half hours of bullying, intimidation and shouting with a threat to strike me off. I put my arm over my face and eyes and never responded to the abuse. He never referred me to hospital for tests and emergency intensive care treatment. I asked to be referred to a neurologist but he refused. I had already been referred to another cardiologist at my local hospital (still treated as routine) but because the GPs refused to authorise an ambulance I was unable to go for those tests, even though I live alone and was registered physically disabled by the Department of Health in 1981, with no family or friends who are able to accompany and transport me to and from hospital. How ignorant and irresponsible is that? This cost-cutting shambolic hidden agenda by the NHS is a disgrace putting many lives at risk. Eventually after six months the side-effects began to subside after the toxicity had gone through my body, but I have been left with irreversible polymyopathy (muscle wasting and swelling) and peripheral neuropathy which has caused cardiovascular problems with no definitive diagnosis. A lump appeared in my right calf muscle too. I have pain in my upper back, down my right arm and wrist, where the muscle wasting and swelling is most severe and clear to see, with one side of the hand/two fingers partially numb and noticeably red and swollen that worsens at night.

All GPs and some hospital consultants have washed their hands of this statins horror story - and abandoned me - refusing to admit I had a serious adverse drug reaction to the drug. The first GP, who struck me off in September 2008, told me ‘the doctor/patient relationship had broken down’ but why? For being so ill? On 10 March 2009 I discovered the reason why. After I registered with another GP practice I asked to read my medical records and discovered malpractice/record tampering. Some referral letters were missing and had not been passed to the new practice. A locum neurologist, who was complicit in the cover-up, wrote false and misleading information in a letter. The receptionist, who arranged the viewing of the records at the new practice, wrongly interfered and insisted on contacting the previous practice to find the missing referral letters. I reported the incident to the Primary Care Trust who found the letters and sent copies to me.

The first emergency Lipitor/statin-induced toxic/chemical poisoning telephone call report and blood test result in March 2008 had been deliberately omitted in the referral letter to the cardiologist and it had been treated as a routine case - not as urgent/emergency. The previous GPs had colluded and lied to cover-up the truth. They withheld information and falsely wrote in letters that ‘I took Lipitor/statins for only three months (not two years) and stopped taking the drug myself’ to mislead. I was then told by the PCT that the receptionist had complained about ‘my unreasonable demands and behaviour’ over the records because it took up too much of her time after which I was instantly struck off for a second time. Simply astonishing. I have not registered with another GP since then. This is a shocking story about health professionals in denial, even involving office staff, who have all colluded and lied to cover-up their collective incompetence and sub-standard healthcare. I’ve been punished and victimised for their unreasonable behaviour. I am not the wrongdoer and all those responsible for the neglect and incompetence should be sacked or struck off.

I have learnt so much about what was happening to me through the internet. I’m so grateful to Spacedoc.net, and other websites out there, who have enlightened me so much about this extremely dangerous drug. It's a terrible state of affairs when I can't trust my own doctors to tell me the truth and care for me. I’m afraid to go near a GP or hospital now because of their abusive behaviour/attitudes and this aggressive drug culture. “For susceptible individuals, the use of a statin drug can interfere with proper functioning of peripheral nerves. Researchers assume that the build-up of statins in the body causes neuropathy in some individuals. If left undiagnosed, neuropathy can lead to deterioration of the muscles and paralysis. This can lead to problems swallowing, breathing, and complications of the heart – as these all involve muscle groups. In the extreme case, severe neuropathy, as a side-effect to statin use, can lead to death.” This is the most accurate and succinct description I have read on the internet of what happened to me - and it’s a scandal.

This drug has destroyed my life and I’m devastated. Had I been sent to intensive care for emergency treatment, after the first life-threatening side-effects report, my additional physical injuries could possibly have been reversed. I’m very angry to have suffered all of this on top of cerebral palsy - a birth injury that caused some pre-existing physical disability. This so-called ‘statin therapy’ has also damaged my immune system that has caused intolerance to any other drug. I went to the dentist recently with an abscess and I had to stop taking antibiotics because of the side-effects. I had no problem at all with antibiotics before I took statins. They also cause bleeding gums and premature ageing and I am at high risk of death from an operation and very vulnerable to infections such as swine flu. I can only drive short journeys now and after any normal exertion like shopping or talking for any length of time I am awoken at night with a raised temperature affecting the heart rate and I have to remove the bedclothes until it lowers again. I can’t cope with hot weather anymore - something I had always loved.

I have read about adult stem cell treatment on the internet that can possibly treat my cardio/polymyopathy and peripheral neuropathy but there are warnings about some dubious/rogue clinics. This has been a huge learning experience for me and I’m horrified at the uncaring attitudes and cruel mistreatment (abuse and neglect) by NHS employees who aggressively deny any blame and responsibility for this medical catastrophe.

[pattyann]

I took Crestor for 5-6 years. I started hurting in my hands, shoulders, thighs, etc. Went to a rheumy and he said, "you have arthritis Pat and that is how it is." Went back a year later because I was hurting worse and he said, "Pat, you are getting old. Get used to it." Finally I got into a deep flare last summer ... blood pressure going out of sight, loss of appetite, running a low grade temp, and every muscle in my body hurt soooo bad. I thought I had myositis. I went back to him in Nov 09 and said I can't take this any more. He did a sed rate and crp and they were high. He said Pat, you have statin induced polymyalgia rheumatica (pmr). On Nov 20 2009 he put me on 15mg predazone. Within hours I was feeling so much better. What a relief to be free of the pain (that took a while). I am now down to 4mg.
I have read countless stories on here of people being in pain. I have not read where anyone was taking pred. (Maybe I missed it, forgive me.) I have read of statin induced als but not pmr. Not all, some of the people on here are having pain, and it sounds like they might have pmr and could be helped by pred.
I got 2 of Dr. Graveline's books yesterday and they make sense. I have high cholesterol and the doctor's don't know what to do because I will not take a statin. My present doctor put me on 4 Lovaza a day and in 3 months it had knocked my triglycerides down by 20 points. My triglycerides were not that bad, it is my ldl. My hdl is excellent.... 84 I think. Now he wants me to take Zetia but I read up on it and ... no thank you. I have been reading and reading trying to figure out what to do and then Dr Graveline's book came along. I found out about it thru this site.
I am going to do a research project and try out spacedoc's supplements. I'm excited! I am indebted to this group. Thank You. If anyone has any questions, just ask, I will attempt to answer to the best of my ability.
PattyAnn