How do I reduce my cpk levels?

[Lobby123]

I have been diagnosed with myopathy due to polymyositis. I have tried high dose of steroids (started on 60mg now on 15mg) and mycophenolate (3000mg) but the cpk levels aren’t consistently staying reduced. My consultant seems to have run out of options.

[GaryMH]

Hi there, Your symptoms are very similar to the symptoms I had when I was first diagnosed in the summer of 2019, two years ago.

I shall suggest you tell your consultant that other options are actually available for you to effectively reduce your cpk levels. For example, when I was in a very similar situation as you, I was offered treatment in hospital with a series of infusions with the drug called rituximab. (I think that’s a correct spelling) Infusion treatments are very common for patients with myositis of all types here in the UK. The NHS will provide you with this particular treatment plan.

In my case, this treatment has helped to reduce my cpk levels quite considerably. This treatment plan may well provide you with the same positive result.

The treatment takes time for you and your medical team, to notice any changes in your blood test results. However, these changes will eventually take place and will definitely reduce your cpk levels. As a result of reducing cpk, many more positive events will take place regarding your general health and energy levels.

My example here may help your situation, but you must be very firm and clear with your consultant because they don’t always offer this treatment automatically. Primarily because of NHS budget constraints. You must be very firm with your medical team and insist that you need this treatment as soon as possible.

Hopefully this will work for you.

Good luck.

[Lobby123 in reply to GaryMH]

Thanks GaryMH.