Myositis caused by reaction to antibiotic

[newbie101]

I've been diagnosed with Myositis very recently in the last month, affecting my hanstring muscles in both my thighs. My myositis was caused by a reaction to the antibiotic ciprofloxacin. I initially had very higH CPK levels and had to receive fluids in hospital. I wondered if anyone else had experienced anything similar. I can't find much online about this.

Finding everything very frustrating - the exhaustion, weakness and soreness etc. just walking around and not being able to be active. Waiting for my appointment to see the myositis specialist. Have had to stop working as the journey would be too much.

[865332]

So sorry to hear your story. I was diagnosed with dermatomyositis just 14 months ago and I totally understand your frustration, confusion etc. There is so little helpful information out there but I do take inspiration from certain articles and think you should read the story of Tri Bourne, the American volleyball athlete and Olympian who was diagnosed with dermatomyositis in 2017. Whilst I fight my fight and everything seems to be nothing but doom and gloom, I find his story inspiring. I refuse to be anything but optimistic. No matter how hard that is at times

Good luck.

[Catpuss66]

might be best to ask your question to the myositis uk Facebook group much more active than here. I have heard of statins causing myositis but not antibiotics. I had allergic reaction to loads of antibiotics, one last year discoloured my legs a year on discolouration still there.

[JeanBlackIsle]

I have necrotising myositis that was triggered by statins. This was proved by muscle biopsy in 2013. Since then I have had many different treatments and so far the most effective has been immunoglobulin infusions. But some treatments that were bad for me suit other people and control symptoms. The main aim is to keep the creative kinase blood levels low because raised ck indicates muscle damage. Make sure you get a rheumatologist who knows about myositis, not all do, and keep asking about blood tests for ck and treatments. Take a notebook to all appointments with questions you want to ask and note down any investigations or treatments offered.

Good luck.