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CPK level is high
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Registered: 10-22-2005
Posts: 142
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Shooting 1300 on two tests. GP is concerned, but knows Kennedy's can result in high levels. Any ideas on how to proceed, other than to rest?
Registered: 10-22-2005
Posts: 142
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Neurologist says par for the course.
Location: San Luis Obispo CA
Registered: 10-10-2005
Posts: 161
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That has been my experince


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email:rheitzman at gmail
Registered: 05-12-2011
Posts: 10
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Dear Cam
you are lucky just for 1300. My result was 800 to 2000 within 8 years and continously rise slowly .
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Registered: 09-28-2005
Posts: 654
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Cam, my CPK was high for several years (>800, but < 1,000), but fortunately I have been able to bring it down over the last twenty years to a level on the high end of normal.

I have a blood test every year to check my CPK. For the last couple of years my CPK is 221 or less.

I still exercise every day and, with the help of a physical therapist, have adjusted my program to stimulate the motor neurons and keep the muscles as healthy as possible. I never exercise to the point where my muscles are fatigued.

Earlier in my progression, I pushed myself too hard and caused more damage than good. For several years I adjusted my exercise program based upon the results of the blood test. It seems to work for me.

I would recommend that you discus options with your doctor to test what might help reduce your CPK, but still will allow you to keep the motor neurons functioning and your muscles as healthy as possible.
Registered: 10-22-2005
Posts: 142
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Thanks for the thoughtful feedback, Bruce. I wish it was exercise that was raising my CPK. I am doing very little physically. Do you have any suggestions for lowering CPK? Does a high level of CPK equate to a high rate of muscle damage? Are there liver consequences?
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Registered: 09-28-2005
Posts: 654
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Cam, my doctor explained it to me this way. The breaking down of the muscles creates a higher CPK and the kidneys cannot thoroughly do their job of cleaning out the excess.

Sharecare.com states the following: CPK is an enzyme found primarily in muscles. This includes the muscles in the heart. Any muscle injury or damage can cause a rise in the blood level of CPK. A high CPK also occurs when someone has a heart attack. Inflammation in the muscles, called myositis, will raise the CPK level. Usually people with myositis have aches and pains and muscle weakness.

Some people persistently have a CPK that is higher than normal because of decreased excretion of CPK through the kidneys. This is seen most often in people with kidney disease.

Today, taking a statin drug is one of the most common reasons for a high blood level of CPK. This occurs so commonly that doctors do not routinely order CPK blood tests when a person is taking a statin.

However, if you take a statin and have muscle aches, then a CPK blood test helps determine if you should stop the statin or lower the dose. A person taking a statin who has muscle aches and high CPK is at risk for developing a condition of severe muscle breakdown called rhabdomyolysis. This condition can result in kidney failure.

Healthline.com states: Be sure to make your doctor aware of medications you may be taking, as there are certain drugs that can affect the results of the test. These medications include:

- statins
- some anesthetics
- alcohol
- fibrates
- cocaine
- dexamethasone
- amphotericin B

In the end, what can you do about it?

- Rest a day before the blood test. Don't do any physical labor if at all possible.
- Recognize that this could be due to the KD progression process.
- Consult with your neurologist. He/she is the most prepared to address your concerns and discuss options. There could be something else contributing to the higher levels including heart disease, certain drugs, kidney disease, a serious injury, etc.
- Understand what particular work or play is causing an increased breakdown in the muscles.
Registered: 05-12-2011
Posts: 10
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Regarding to high CPK, I can't run but stop and rest after walking slowly for 100 m. I don't climb up staircase because I couldn't. CPK is still at 2000. Would Curcumin cause its high value.I thought taking Curcumin help a lot but it didn't at all. I can't do anything except laying on bed or siting on chair in order to lower my CPK value?
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Registered: 09-28-2005
Posts: 654
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James, no, just sitting around would be detrimental to your quality of life. It is important to keep the motor neurons firing and muscles stimulated.

Discuss and develop a list of options you can try to help reduce your CPK while still maintaining your quality of life.
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