CK Levels and ALS Progression

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em9988

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I just saw this article today and it mentioned that higher CK levels were correlated with slower progression in ALS

Would anyone mind sharing their CK levels and their general progression rate over the years? I'm just looking for some anecdotal experiences.

Thanks in advance if you guys decide to share.
 

Nikki J

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Not true of me. I have never had a high reading and have been mostly 80 something but recently in the 40s My progression is glacially slow.
there are other papers trying to correlate labs with progression. recently there were a couple on absolute neutrophils and on the ratio of absolute neutrophils to absolute lymphocytes


 

sassy

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My husband's ck levels are usually around 900 and he has very slow progression....
 

old dog

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My creatinine level has always been a bit high. My PCP recently became concerned and ran a test where blood is drawn and a urine sample is collected on the same day. The blood test shows my creatinine at 0.94 and is marked Non-Optimal. The Optimal range shown is 0.60 - 0.88. The unit of measurement is mg/dL. The urine sample shows creatinine at 17 which is low. The Optimal range is 20 - 275. The unit of measurement is also mg/dL.

I thought I remembered being told a higher creatinine level was not a cause for concern in ALS/PLS patients and sent my PCP the article referenced by em9988. I haven't heard from her, so she must have decided I'm okay.

My condition seems to be holding fairly steady. I notice slight increasing problems with clumsiness in my hands and some loss of grip strength. It's hard to tell what might be progression and what is the result of old age and lack of exercise.



I
 

preacherman

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My level has been consistently around 480... going on 6 years.
I hate to say this often but my progression has been pretty much nothing for the last 3 years or so.
I feel very blessed.
I had heard that a moderately elevated CPK level is a good sign for a better prognosis... seems right to me.
I have been on Radicava infusions since late 2017 so who knows though...
Just slow progression?... Radicava?... the right diet and exercise?..... good chemistry?.....
That's the trouble with this disease... we just dont know
 

sassy

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My husband is also on Radicava
 
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My sister's CK levels have been very high (387 in 2015, 311 in 2015, etc.) and her progression has been very slow relative to the literature that I have read. However, her motor function has steadily declined. It started in her lower extremities and she is no longer able to walk or stand. Over the past year, she lost significant strength in her arms, to the point that she could not lift a cup to drink, brush her hair, etc. I posted on another thread that she started having severe systemic itching about 1 year ago (awful, to the point she could not sleep). We tried all types of creams and OTC therapies, but nothing completely resolved the itching. She had blood work done a few months ago to look at renal and liver function and all was fine except high normal ALT (liver function test). The ordering physician started her on cholesteramine and within 2 weeks, she started to regain strength in her arms and now (2 months later) she can lift a cup and drink without spilling, brush her hair, etc. She still has the itching, but not as severe. I have been hesitant to post more on this because it was coincidental that she received the cholesteramine and I have never heard of any regression of symptoms with this disease. I have read everything I can and other than some research done on bile acid metabolism, I can't find any connection. Even AMX0035 reported delay in progress in 38% of patients (I realize it is not the same as cholesteramine, but it is a combo drug of sodium phenylbutyrate and taurursodiol). I am waiting to take her back to her neurologist (appointment in January).
 

Bestfriends14

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My husband's CK level (last time we checked) is 116 and he's really, really slow progressing.
 
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