High CK (Creatine Kinase)

[Insomniacette]

Hey folks,

Rando question... My rheumy in her letter to my GP has written that I have a high CK of over 700...

I've been googling and it says all sorts of scary stuff out there which I am blocking out like a pro because there's no point assuming the worst. But... I'm just wondering anyone else had this? Anyone else have a clue what it means in the context of sjogren's or lupus?

Anyone found a way to lower it?

Sending you all love you awesome people you!

xxx

[PMRpro]

Had you been doing more exercise in the period before the blood was taken? Or even knocked a large muscle to cause an injury?

hopkinslupus.org/lupus-test....

says it can be a sign of muscle inflammation or overlapping condtions in SLE.

That isn't massively high - it can get to well above 10,000!

And this

medscape.com/viewarticle/91....

is about someone with Sjoegrens with much higher levels than you - due to a bit more exercise than usual and taking supplements. They told her to rest and not take the supplement. But they also say that CK up to 2000 IU/L is expected because of the progressive muscle weakness often seen in Sjoegrens

[Insomniacette in reply to PMRpro]

PMRpro you are the person I needed today! Let's hope it's just that. They will re-test me in september and I will make sure I take the tube instead of walking and let's see if it is lower! Keeping optimistic!😀Thank you.

[Jmiller623]

Hi Insomnia. I also have perpetually high CK (hundreds not thousands). It’s lupus related myositis. I’ve made sure to have labs done without exercising 72 hrs before at the advice of my rheumatologist. Made no difference for me. My legs burn all the time. I’ve been tested for polymyositis and dermatomyositis. Both were negative. My EMG was normal.

IVIG has been the only thing that helps me. Makes my muscle weakness/burning go away completely until due for my next infusion. A week before next infusion, myositis symptoms flare. I think Plaquenil may also exacerbate it but it keeps my other lupus problems under control.

It’s a crap shoot. Happy to discuss more over DM. Sending hugs. ❤️xx