A man can't walk after statin medication he took for his high cholesterol made him develop a rare muscle-weakening condition, he claims. Mark Freeman, 47, started taking the medication four years ago and had no problems until he started to struggled to get out of bed in the mornings.
He had fevers, muscle aches and temperatures at night and, over nine months, he lost his ability to walk, had to quit his job and now uses a wheelchair all the time. He has since been diagnosed with necrotizing myopathy - a rare autoimmune disease which causes chronic inflammation of the muscles and weakness.
Mark says doctors hope his symptoms can be managed by a plasma exchange - where the liquid part of his blood is removed and replaced. But for now he's too unwell to undergo the procedure.
He's speaking out to warn others of the signs of a reaction to the commonly prescribed cholesterol medication. Mark said: “I get miserable and very upset that I can’t stand or walk.
"I struggle with moving around in a wheelchair, being at everyone else's schedule and needing carers to go to the toilet. I’m very upset about my life and what has happened, I’ve lost my job and my career - I was a food technologist and I loved it.
“I was doing really well for myself and suddenly muscle disease takes it all away from me and I lose it all, I don’t know what to do, I'm stuck. There is a lot of information that suggests that statins are safe and muscle aches while on statins are not caused by statins.
"My story is the exact opposite and is proof that it can happen and when a reaction does happen it can be life changing.”
Mark first started suffering from fevers, muscle aches and temperatures at night in April 2020. Despite not noticing symptoms during the day, he realised he was becoming weaker until he was struggling to walk or get out of bed.
His doctor ran some tests and discovered Mark had high levels of creatine kinase (CK) - an enzyme which is released by the muscles into the blood stream when the muscle is damaged. Normal levels of CK for men are 40 – 320 units per litre – but Mark’s readings showed 12,000 units per litre, he said.
He was rushed to hospital where he was told to stop taking the statin medication and underwent an MRI scan. This confirmed he was suffering from a rare autoimmune disease which causes chronic inflammation of the muscles and weakness.
A biopsy confirmed Mark had the HMGCR antibody present in his system, confirming his diagnosis as necrotizing inflammatory myopathy. He was then transferred to Charing Cross Hospital where he stayed as an inpatient for seven weeks and put on immunosuppressive drugs before being sent to a muscle rehabilitation unit in another hospital.
However, as the disease was still progressing, Mark was told they would have to wait until the disease was under control. Now he is waiting to undergo a second plasma exchange in the hope it may help his symptoms.
Mark said: “It’s had a tremendous impact - it’s broken me as a man. I’ve found it hard to come to terms with the fact I can't walk or stand again, and it’s hit me in the middle of life at 46.
“I don’t know what else to do apart from hope a plasma exchange fixes it, that’s the angle we’re trying to take. I’ve been taking statin medications for four years to help control my cholesterol and had no problems whatsoever.
“I’m now led to believe that all of a sudden, my body developed a reaction to the statins and caused my immune system to attack its own muscles. Myositis in general is not that uncommon, it’s an immunosuppressed muscle disease.
"But I got the necrotizing variant of the disease which means it kills the muscle tissue not just causes pain. By the time I was put on immunosuppressive drugs it was too little too late - the disease was very aggressive because it had already been in my system for six weeks by the time I went to the GP.
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“The time I was in Ealing hospital and Charing Cross hospital were crucial in stopping the disease from engulfing my entire body. It still did lasting damage during that time and hurt my leg and arm muscles quite badly - to the point where any follow-up treatment wasn’t helping and damage to my thigh muscles was non-recoverable.”
Mark's condition has been recognised by academics. One medical paper said: "Statin-induced immune mediated necrotizing muscle disease is an inflammatory condition triggered by statin exposure and continues after statin discontinuation.
"It is a rare side effect of statins that is challenging to diagnose and treat."
