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Posted 10/5/2021 4:59 AM (GMT 0)
Does anyone here have any experience with elevated CK (muscle enzyme) levels?

I have UC, but have also been seeing a Rheumatologist, who says I have Mixed Connective Tissue Disease (MCTD). He has me on Plaquenil (Hydroxychloroquine) to, in his words, keep you from getting Lupus. He had some blood tests done recently, and most are normal but my CK level came back slightly elevated at 283 (normal is 44-171).

He's sending me to a Neurologist to see if I have Myositis. But I'm wondering if the fact that I'm taking Hydroxychloroquine might be responsible for the bump. He says no, but from what I read, chloroquine can affect CK.

Any knowledge here on this topic?

Thanks,
sonvolt
Posted 10/5/2021 8:40 AM (GMT 0)
How was the MCTD diagnosed? What were your blood test results and what were your symptoms?

I thought that using plaquenil to keep the MCTD from progressing to lupus was an old-school thought that has fallen out of favor, as recent research indicates most MCTD doesn't progress to lupus.

I've read that plaquenil can cause elevated CK levels, and yours aren't very high. In some forms of myositis they can get really really high (in the thousands?).

Why would you go to a neurologist to see if it's myositis? I've seen a neurologist and a rheumatologist for my UCTD diagnosis (undifferentiated connective tissue disease, pretty similar to MCTD), and I would think the neurologist would send me to the rheumatologist, not the reverse, for testing if myositis was suspected.
Posted 10/5/2021 12:47 PM (GMT 0)
Have your CK levels come back elevated consistently? Or just on one test? I go for routine blood work every six months (in addition to one-offs if something is being looked at) and a couple of times the CK level has been elevated. I have been able to trace it to having done a workout shortly before the test. The first time it happened, I had walked a vigorous (uphill) 14K walk to the lab... Once I figured out exercise was causing it, I try to avoid it before a test. My doctor sent me for a retest when it happened, and it was back to regular levels.
Posted 10/5/2021 2:26 PM (GMT 0)
My MCTD was diagnosed back in 2018. The doctor did tests like DNA Double Strand, ANA Titer, ANA Pattern, Antibuclear Antibody (positive), Rheum Factor.

And I don't exactly why he's sending me to a Neurologist either, but I guess he's wanting to explore that avenue for some reason. He said he "wasn't worried" about my CK score, but when I read of all the things high CK can indicate, makes me nervous.

I don't exercise, though I do walk about a mile or so every day to keep the joints/muscles moving since I've been working from home for the last couple years due to COVID. He told me to not do my walks for three days before the test to see if that lowers the CK.

I'll have more blood tests before I see the Neurologist in Nov., but I do intend to ask the Neurologist if the Plaquenil could be the cause of this. I've seen it mentioned in too many places as possibly affecting CK.

But overall, I've also read that Plaquenil can improve energy and help folks with MCTD, so I'm hopeful that kicks in in a couple months or so.

Thanks for your thoughts, I appreciate it.
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