Hi there Buttercup. None of us know what is normal CK for any of us. We know the normal range but not our own normal as CK is not routinely tested unless you have this disease or some others.,my a Rheumatologist told me only once what my CK levels. Were which were in the thousands at diagnosis. I know he tests it about every six months now but he is far more interested in my strength and 'how do you feel' if your Rheumatologist is happy eith your lab results annd you feel ok then Buttercup, enjoy your life and moving forward. Many people would love to have your CK levels. Bad news travels fast, a doctor is very quick to let you know if your lab work is a problem. Hope you are getting on ok. Autumm

Hello Buttercup. Forget about normal in our life of PM/DM. I have PM and it seems as if my CPK is just about all my Rheumy actually follows and I am sick of hearing about it. Of course when it is what he considers low or normal he is very happy. Of course no matter if it is low or not, he orders additional blood work. If it is left up to him, I would get my bloodwork done every two weeks. I have had so much bloodwork done that the techs can't find veins in either arm or hand. I have recently changed insurance plans and he is no longer in my network a good and a bad, so I have decided to not see a Rheumy until my new Neurologist tells me that I need to see one. I am also tired of seeing all of these various specialist who order the same lab work and test to be done. They can now start reading each other's reports instead of asking me what my last whatever showed. My insurance and I have been spending too much money and I am sure that they were taught how to read the reports. I have taken control of my treatment as far as the financial end is concerned.

The CPK does have something to do with your WBC. I never have a headache so I haven't taken ibprophen in about 3 years, but of course I taken such strong pain meds for my neuropathy that a headeache doesn;t stand a chance,..lol.

I would suggest you go online and keep a journal of your labs and when and what works for you and go from there. I goggle everything, read what is suggested by group members and go from there and most times suggestions from grp mbrs works.

I am a tea drinker but have cut back a lot, a whole lot. I use to drink at least 5 or more cups per day and I can barely drink 2 whole cups per day now as I do not like cold tea and I normally am drinking while doing something such as typing so it gets cold and I do not like wasting anything, so that cup goes in the trash. Do whatever works best for you. Life is so short and I do whatever makes me feel good.

Enjoy your day my friend.

hi! well im 24. my doc said "normal" for an active woman my age is 300 at the HIGHEST.
how do you feel??
how much has it come down?
i personally would not be worried if you feel good and your doc isnt to concerned :)

Hi Buttercup, Your doctor should explain to you what is specifically causing the rise in your CPK.

In my situation, a rise in CPK where there is rhabdomyolysis can result in kidney failure and/or heart failure. When I flare, I will have a rise in liver enzymes, high WBC, low lymphs, and aldolase changes but no CPK rise. If I get a CPK rise, then I am in deep voodoo with my kidneys and heart.

Each of us is different. Be sure to ask the doctor which of your organs is screaming the CPK. It may be MORE than just muscle enzymes so don't settle for the active disease excuse. Make the doctor tell you WHICH CPK enzymes are high - Heart, Brain, Kidney, Muscles, Thyroid etc.. We already know muscles are involved. If you are not weak then it is something else making the CPK score higher other than muscles.

I show visible inflammation on my legs, ankles, puffy hands, puffy arms, and face. My inflammation is heart and kidney related. If you do have visible inflammation then do ask the doctor about the causes of your puff. I need to drink a lot of water daily too because I get dehydrated.

I hope this helps.

Hi all. I am confused. Are we posting on CK levels which show us muscle damage or CRP levels which show inflammation . The concern would be very different about raised CRP which would tell me I had problems. If Buttercupi is talking about her CK levels and is lowering her Prednisone having just seen her Rheumatologist she is ok. Autumm

Meow,

Hello Friends,

Thanks for all your replies. I have decided to let go and stop worrying. I think I'm concentrating too much on ole Polly, so I'm hoping to take a real vacation.

Hope y'all are feeling good today.

Hugs & A Mouse Burger

Purr,
=^.,.^=

Great idea Buttercup. Happy Easter. Thank you for the Mouseburger!!!! Autumm

Meow,

You're welcome autumm...Rowl.

I've just e-mailed my Rheumy. I asked him if I could park on 10mg of Prednisone until I see him in July. The steroid also helps control my Gastroparesis and Asthma.

I guess I'm kinda scared of dumping the steroid all together.

I told my Rheumy, my Diabetes RN, and my Primary Doc about this site. They all think it is a great spot, and that it's great I get so much good advice. I also told them y'all help me cope with the depression this disease (and all my others) sometimes brings.

My clinic/hospital uses a tool called "My Chart". It is how patients can keep track of their tests, meds, and e-mail our docs. I think it's great, and use it a lot.

Having a Rheumy who has committed to work with you to control PM or DM or IBM is blessing. Mine has told me, we're in this together. He is a gentleman, and doesn't get angry when I must ask him to alter his prescriptions. I have total confidence in him, but reserve the right to disagree.

Happy Easter Friends,
Purr,
=^.,.^=

Hi Buttercup. Don't be frightened of coming down from your Prednisone. You have great faith in your Rheumatologist and he wants you to try, be guided by him as he knows staying on it above 5 mgs long term can make you weak and cause problems. I too was very nervous of coming off, I took longer than my Rheumatologist wanted but I did it. You can do it Buttercup. Best wishes. Autumm

Autumn, I was talking about Creatinine Phosphokinase (CPK) which actually has three different tests. Most of us with DM/PM have our doctors run a CPK test which is for skeletal muscles. People with DM/PM can have more than a skeletal muscle involvement that involves a form of CPK (NOT CRP). Anyone who has heart and lung issues should also check if their high CPK is actually related to heart/lung issues which is a different CPK test from the one that is run for skeletal muscles.

High CPK can be related to: stroke, DM/PM, heart attack, inflammation of the heart (myocarditis), lung tissue death, rhabdomyolysis, hypo and hyper thyroidism.

The isoenzyme tests are CPK 1 for brain & lungs, CPK2 for heart, CPK3 for skeletal muscles.

Here is an article:
CPK Isoenzyme Test: Purpose, Procedure & Results www.healthline.com>Reference Library

You can also google the above article by title.

If I was having a high CPK and no muscle weakness, it is time to check the heart for me with CPK2 testing.

I hope this gives some clarity to what I was talking about with CPK. Most of us are programmed to think there is just one CPK test and that is for skeletal muscles - this is not the case.

I hope this helps.

Meow,

Everything y'all post helps...Thanks for your advice and encouragement.

Got some body aches tonight, especially in my hips. I take Tramadol for Fibro, so I took 50mg @ 6pm. I got permission to take a 200mg Ibprophen for headaches, so I think I'm gonna take one of those for the hip aches.

I think I'm gonna do like you did, autumm. Nice and slow. My rheumy wants to cleanse my body of the Pred, then try fresh in August. But I think we're trying to taper too fast, so I'm gonna park on 10mg until July, then go to 5 the last week of July. Maybe by Thanksgiving I'll be steroid-free. God willing, I will.

Purr,
=^.,.^=

Hi Trpt. I only know and concern myself about CRP and CK levels, I let the doctors worry about anything else. You know what I am like by now, I just don't do too much information. This disease could become a full time job and I have a life to live too. Hope you are well. Best wishes to you. Autumm