CK level of 1024--what does this mean?

Bones, joints and muscles
1

I was diagnosed with PMR 3 years ago and have been on prednisone since then (starting at 15 mg, now at 4.5 mg). My CK in 2017 was 85. My next CK test was last week, and CK was 1024 (normal is 0-160 unit/L). Can you give me any sense of what this means for my body?

I have a lot of health problems in addition to PMR, including OA in my knees , hip pain that may be an early stage of RA, and Myofascial Pain Syndrome (chronic pain) in my back and neck for 33 years.None of these is new.

My PMR feels pretty controlled at 4.5 mg (I finished from my DSNS reduction from 5 to 4.5 at the end of September).

Any thoughts about where this inflammation might be and what it might be doing (my doctor–not rheumy–says it’s destroying joints somewhere)? I see the rheumatologist on Monday and would love some advice/questions/info to take in with me.

I recently had an echocardiogram that indicated Pulmonary Artery Hypertension, which is caused by inflammation, but then a second echo showed levels closer to normal, so the cardiologist said not to worry about it. But I am fairly worried about it, especially after these CK results.

Anyway, thanks for any thoughts you can share.

Jeanne

2

Not a medical person so can’t help. But I think the questions you are asking on the forum are a really good starting place. You need to know what the number signifies and what it means for your body. You need to know which of your various ailments may be causing it, and whether there could be something as yet undiagnosed going on. What will the doctor(s) do to confirm what is going on, and what safe and effective treatments are there? When offered a medication do a little research and make sure it’s the best option. (For example: We all know pred is best for PMR. But what if you went in as a new patient and were offered something else, say tocilizumab, as first line treatment. You should have enough basic information to know that it would not be appropriate to start there.)
You could also ask if things like exercise and nutrition are also helpful and if so, what kind and how to proceed.
Hopefully one of the experts will be along before your appointment. Best wishes!

3

You do mean creatine kinase? Just checking.

Are they sure it is PMR? CK being high suggests it may not be PMR (it doesn’t damage muscle) but some form of myopathy which looks like PMR - they are often treated with steroids too and if the dose is lowered - the damage can start again.

Are you on a statin of any sort? They can lead to muscle damage that would raise the CK level.

I think your doctor needs to do a bit of reading - CK isn’t usually associated with joint damage but muscle damage.

These might help you find the right questions:

You are at a low dose of pred - one at which you need adrenal function to return. If that isn’t happening well that could be causing Addison’s syndrome secondary to chronic steroid use - and it is one of a few endocrine disorders that could lead to raised CK.

4

Eileen,

Hi. Yes, this is creatine kinase. Is it possible that I had some myopathy in 2017 when I had a low CK and PMR was diagnosed?

I’m not on any statins.

I forgot to mention that I also have a positive ANA when it should be negative.

The rheumy ordered several more tests, which I haven’t had yet: another CK, Aldolase, CRP, extractable nuclear antigen Ab, Myositis Antibody Panel Plus, Sedimentation rate, troponin. Do these seem like they would reveal whether I have PMR, myopathy, Addison’s, or something else? She mentioned that inflammatory myocitis might be a possibility.

I had asked the rheumy for these follow-up tests: CK isoenzymes and CK-MB, but she said the computer wouldn’t let her request those. She said I would have to ask the cardiologist.

I would like to find out where the inflammation is occurring–in lungs/heart, in muscles, or in gut (I have IBS-C, and it was the gastro who ordered the CK test in the first place).

Is there a test I can get to see if my adrenal function is returning?

Thanks for your help.

5

Well, I’ve had more tests. On retest 10/30/20, CK was 741. (Some other abnormal test results that may be relevant: my ANA is positive when it should be negative, Aldolase elevated, Hematocrit low at 35.5, RBC low at 3.88, Ferritin shot up from 103 to 232, TiBC 191.) I am breathless, have a fast heart rate, swollen ankles, muscle stiffness (hard to walk), weak thigh muscles (hard to climb stairs) and neck muscles (floppy head), difficulty swallowing, and muscle pain. I also had an echocardiogram that showed very high right atrial pressure (15 mmHg), but a second echo showed an elevated level closer to normal (8 mmHg–normal is up to 6). The rheumatologist’s preliminary thought is inflammatory myositis of some kind; as I looked on the Internet at the different conditions under this umbrella, polymyositis seems the closest to my symptoms. I also wondered if it was possible that this was a PMR flare, though the symptoms seem quite different from those I had when I was diagnosed 3 years ago and went on prednisone.

When I contacted the rheumatologist two days ago, she responded, “The myositis panel is pending. CPK is still elevated. Aldolase is also elevated. I recommend increasing prednisone 20 mg/day for now and update me in a week with your symptoms.”

I’ve been on 4.5 mg pred and have been working very hard for a very long time to get down to this level. The idea of going up to 20–I started on pred at 15 and have never been higher than that–kind of kills me. But then I imagine a lot of damage is being done by the inflammation right now. I went up to 6 mg yesterday, which is the level at which I didn’t have any of the symptoms listed above. I thought maybe if it was a flare, the advice to go back to the dose where there was no flare could work.

I’d love any thoughts or advice. What I find on the internet regarding treatment for polymyositis is 1 mg/kg/day of prednisone, and I weigh 60 kg, so I guess 20 mg doesn’t sound so bad. The Internet says, “This high dose is usually continued for 4-8 weeks, until the CK level returns to reference ranges. Taper prednisone by 5-10 mg on a monthly basis until the lowest dose that controls the disease is reached.” That sounds like a very fast taper to me.

I guess what I’d love to have from you is a sense of whether this seems like it could be a PMR flare, whether I ought to go up to 20 mg or not, and if I do, whether I could potentially get back under 10 mg in 3 months as suggested by that quote. I already have osteopenia from the pred and hate to think about future years filled with broken bones.

Thanks.