I'm sorry your CPK is high again Okapi. I'm remembering a discussion during the TMA conference a few years ago in Vegas. One of board members presented and was asked about high CPK myositis. He said that he felt there was a subtype of myositis that has high CPKs (in the thousands)and yet the person is still able to function. He called it a necrotic myositis. He mentioned it can sometimes be resistance to the typical drugs but does seem to respond to Rituxan or IVIG. He said they are still researching and trying to determine if there are indeed subgroups of myositis that would help determine the best treatments.

I hope you are feeling okay. Perhaps talk to your doctor about Rituxan or IVIG.

I do think it is normal for CPK to go up with physical activity.

Hi Okapi2. I don't know what us going on with your CK. I have also heard about what Lexis posted to you. My Rheumatologist never mentions CK levels, he talked about them once at diagnosis and has not mentioned them since. I have asked but he always says he treats the person not the CK levels. He says strength is more important and there is no way of knowing what is 'normal' CK for any of us as its only tested when we are ill. I think a better guide to the inflammation is your CRP or ESR. I am so pleased you are feeling well and strong. Long may it continue. Autumm

Hi Okapi2, It is important to find WHICH CPK is causing the high numbers. The heart is CPK 2 and Kidney adrenals are another CPK number. The liver can also throw out a CPK. We all assume with Myositis that the CPK just relates to muscles. When organs have a problem then they will throw out a CPK also.

I hope you will get to the bottom of what is causing the high CPK's.

Keep us posted.

My CK/CPK and CRP are usually normal or only slightly elevated. But my ESR (sed rate) is what I battle. Whenever I was still on high doses of prednisone, my ESR started dropping, but was still high. However, I was gaining strength and feeling some better. The neuro was shocked and found it unusual that I was functioning as well as I was even though my ESR was still so high. At that point he chose to treat me "clinically," rather than basing treatment on blood work. My GP at the time knew me quite well, and he agreed, because my blood work can be great even when I'm sick. So blood work isn't the only thing that doctors use when treating us.

My hubby to had high CPK levels, 7000-8000 when he was at his worst. Rash, pain, unable to walk. Now after 11 months of treatment, his CPK is at 104 but he still feels terrible. We have noticed that it is his adolase number that we watch. When his adolase number is up, he hurts. It has gone from 67% down to 9%, but now it is back up to 16.5% and he is hurting. WHen he was at 9% he was at his best... I think everyone is different, this PM/DM is a mess for Dr's..

Thanks everyone for the replies! It is so confusing. It's so true that they are only tested when we are ill! Who knows what they were like when I was younger?

My liver is still messed up so that could certainly be part of it. On the plus side, I feel great. I am sore sometimes if I overdo it, and I have noticed my body takes a long time (a few days) to recover from exercise. But I'm learning how to deal with that. Learning, after 5+ years of having this.

Meow,

My highest (recorded) CPK was 6600. At that number, I was very weak in my legs/ankles, and was falling a lot. The sudden falls/weakness caused me to seek a diagnosis. I was scared it was MS. I didn't know about Poly. Turns out, it was Poly.

My number is now around 290. I live in a stressful situation, and I try to exercise via walking everyday. Today, I'm going to start a physical therapy, so I wonder if that activity causes the number to rise just because I am now pre-disposed to inflammation being in my muscles. I also think my CPK number is based on muscular status, not brain nor heart/lungs. Not sure, just guessing, as my Rheumy kinda gauges my dosage of P & MTX on the number.

I don't know what I'm going to do, if the CPK is any higher the next time I blood test. My diabetes will allow up to 15mg of P, and then it starts to go too high. So...I just have to pray and hope the number stays below 300.

Hugs to All,
=^.,.^=