When the muscle layer of the heart weakens and doesn’t pump effectively (cardiomyopathy),patients may experience fatigue and lethargy, swelling in the legs and feet, cold extremities, digestive problems and other symptoms of poor circulation. Drug treatments available through a cardiologist may enhance heart muscle function. Some patients benefit from a pacemaker, and some may even undergo a heart transplant.
to be continued
HORRIBLE and TRUE
to be continued
HORRIBLE and TRUE
My partner, Mustafa, a long term smoker, underwent a single vessel angioplasty after an angina attack in September 2005, aged 55. He immediately stopped smoking and, on his doctor’s advice, joined a three month rehabilitation exercise class and began taking statins (40 mg simvastatin to start with, replaced by 40 mg atorvastatin within two months). He continued to eat a healthy Mediterranean diet and take regular exercise (he was a semi-professional dancer in his youth and, having sold his business earlier in 2005 and taken early retirement, now enjoyed long walks exploring London with a friend). Although he had been a moderate drinker, in response to his health scare he cut down on alcohol. He was now free of angina, active, and positive, and said that he had never felt better.
Early signs
The first indications that all was not well came in spring 2006, when Mustafa started complaining of muscle cramps, especially at night, in his calves and thighs, usually after a long walk. By early 2007, he found it an effort to keep his arms aloft to wash his hair in the shower or to walk up even mild slopes. Sitting became uncomfortable, his neck and shoulders ached, and he experienced pain after mild exercise or even just standing for fairly short periods. He started to age visibly: his limbs lost muscle tone, his hair fell out, and he began to look permanently anxious as his confidence eroded. He had been proud of his looks and always dressed well, but now his clothes no longer fitted him and he had little spare energy to expend on his appearance.
He made several visits to his general practitioner over this period, and in August 2007 the statin dose was halved at his request. By October, his serum cholesterol level had risen to 5.4 mmol/L, but, despite the lower statin dose, his creatine kinase level continued to rise and was now at 312 units/L.
Things fall apart
He became depressed about his permanent tiredness and weakness, and obsessed with finding out what was wrong with him, spending most days reading medical reference books. This fixation developed into a loss of trust with all but a few members of the medical profession with whom he came into contact during his illness. He felt that nobody was listening to him and that any discussion he wished to have about the documented side effects of statins and how they might be affecting him was met with a wall of silence. Two memorable remarks that contributed to his frustration were, “If you don’t take the statins, you will die” (his GP) and “Ah, you’re on statins, you will live forever” (a hepatologist).
A welcome turnaround
In April 2008 Mustafa decided to stop taking statins without telling his doctor. By late May, his symptoms had improved dramatically. He was able to walk long distances and up steep hills again, even in hot weather on a holiday in Turkey. The fact that his joie de vivre was returning was a huge boost for me too—it seemed that we could get our life back together again now that he was starting to have the energy to do the things he used to enjoy.
Reversal of fortune
At a check-up some time around the end of June, when his cholesterol level was found to have risen, he admitted that he had stopped taking statins. His GP strongly advised him to go back on them, and within a short time he was complaining of breathlessness, weakness, and backache. His GP switched him to ezetimibe (10 mg), and within 10 days he was complaining of back and leg pain and a hoarse voice. His health continued to deteriorate, and by early November his voice was weak, he was fatigued all the time, and on one memorable night had to get up seven times to urinate. He developed a suffocating sensation when lying down, and his urine became brown and cloudy, but he was told that a urine test showed nothing abnormal. However, in late November his GP told him to stop taking ezetimibe immediately: we later discovered that his creatine kinase level had reached 783 units/L at that point.
Despite stopping all cholesterol lowering drugs, he continued to decline. By early 2009, his appetite had reduced, he had worsening muscle wasting, weakness, and twitching, especially at night, and in February was admitted to hospital. His emotional state at this time was poor; he was convinced he was going to die. While in hospital, he was seen by a neurologist whose notes state that there was “muscle twitching in thighs, which are rather coarse for true fasiculations” and who diagnosed statin induced myopathy. After a week, he was discharged from hospital without any real knowledge of what was likely to happen to him.
Final months
As the year progressed, he developed an itchy rash on the back of his legs, a dry mouth, mouth ulcers, and was often cold (particularly his legs, feet, and right shoulder), especially at night. He had vivid dreams, which he would act out; he was too weak to cough and could sleep only on one side, otherwise he couldn’t breathe. During June, he had increased difficulty breathing and insisted on sitting in a chair all night, as he felt he would stop breathing if he went to sleep lying down. His posture was poor, and his neck became very weak. Eventually his head twisted round to the left, and his right shoulder was permanently raised. Several tests confirmed progressive weakness of his proximal muscles but normal strength in his limbs.
He had an appointment with a neurologist, who agreed with the statin related diagnosis and recommended a muscle biopsy if there was no improvement in his condition over the next three months. As his condition swiftly worsened, we got an emergency appointment at the same hospital, where he saw a different neurologist, who diagnosed, with little preamble and with nine people in the room, motor neurone disease. This came as a shock to us both and a huge blow to his already fragile mental state.
Despite this diagnosis, he had no muscle stiffness, no difficulty swallowing, and he never once fell. His fine dexterity was good: he was able to dress and feed himself until a few days before he died, only eventually needing help with these tasks because he was too weak to manage on his own. Two weeks before he died he threaded a needle, changed a fuse in a plug using a screwdriver, and fastened a small fiddly necklace clasp for me. I encouraged him to do as many of these tasks as possible in an effort to contradict a diagnosis that he found too awful to contemplate.
He died in hospital on 22 August 2009 of type 2 respiratory failure (oxygen level 50% on admission to the emergency department) and two heart attacks over the course of three days.
Listening to the patient
During the last six months of his life, Mustafa came under the care of a different GP at the same practice. Dr Freris was kind and sympathetic and made appointments for him at times when I could be present too. She listened to his fears and concurred with his view that, whatever the final diagnosis, statins had had a serious effect on his health. Although it was clear to us all that he was beyond help, Mustafa always came away from those appointments feeling that he had found a doctor who understood what he was going through.
Are There Side Effects of Statin Drugs?
Most people who take statin drugs tolerate them very well. But some people experience side effects.
The most common statin side effects include:
- Headache
- Difficulty sleeping
- Flushing of the skin
- Muscle aches, tenderness, or weakness (myalgia)
- Drowsiness
- Dizziness
- Nausea or vomiting
- Abdominal cramping or pain
- Bloating or gas
- Diarrhea
- Constipation
- Rash
Statins also carry warnings that memory loss, mental confusion, high blood sugar, and type 2 diabetes are possible side effects. It's important to remember that statins may also interact with other medications you take.
Which Statin Side Effects Are Serious?
Statins are associated with a few rare, but potentially serious, side effects including:
- Myositis, inflammation of the muscles. The risk of muscle injury increases when certain other medications are taken with statins. For example, if you take a combination of a statin and a fibrate -- another cholesterol-reducing drug -- the risk of muscle damage increases greatly compared to someone who takes a statin alone.
- Elevated levels of CPK, or creatine kinase, a muscle enzyme that when elevated, can cause muscle pain, mild inflammation, and muscle weakness. This condition, though uncommon, can take a long time to resolve.
- 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. Fortunately, rhabdomyolysis is extremely rare. It occurs in less than one in 10,000 people taking statins.
Statin Warning Signs
If you experience any unexplained joint or muscle pain, tenderness, or weakness while taking statins, you should call your doctor immediately. Pregnant women or those with active or chronic liver disease should not use statins.
If you take a statin drug, tell your doctor about any over-the-counter or prescription drugs, herbal supplements, and vitamins you are currently taking or plan on taking.
Which Statins Are Approved for Use in the U.S.?
The statin medications that are approved for use in the U.S. include:
- Lipitor
- Livalo
- Mevacor or Altocor
- Zocor
- Pravachol
- Lescol
- Crestor
Since their arrival on the market, statins have been among the most prescribed drugs in the U.S. with about 17 million users.
