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blessedtobeme 09-20-2012 04:01 PM

Elevated CPK Level
 
Do your muscles get weaker as your CPK level increases? Mine is only mildly elevated at 271 but has been steadily climbing for the past 18 months. My AST and ALT are also elevated.

Thanks for your input.

ladybud 09-20-2012 04:29 PM

Re: Elevated CPK Level
 
Yes, you can get muscle weakness with myositis, and the CK level can be correlated. My myositis seems intermitten, and I can always tell when my CK is up. Mine gets to about the same level as yours, then drops to normal. The AST and ALT can come from muscle as well as liver, so that fits. Do you know what kind of myositis you have? I hope it levels off or drops so it doesn't get worse.

blessedtobeme 09-20-2012 05:14 PM

Re: Elevated CPK Level
 
Thanks, Ladybud. Actually, the only thing I have even a remote diagnosis for is RA. I had an ultrasound yesterday that showed synovial thickness. My hands and toes are swollen and painful. I have a muscle biopsy in a couple of weeks. Have been diagnosed with Raynauds.

blessedtobeme 10-22-2012 11:50 AM

Re: Elevated CPK Level
 
Hi Ladybud,

Doctor determined it is polymyositis. Started me on 60mg Prednisone. Referred me to a cardiologist and pulmonologist. My resting heart rate has been in the 130s/140s and she is concerned because I'm so out of breath all the time.

ladybud 10-22-2012 12:46 PM

Re: Elevated CPK Level
 
I am so glad you are getting some answers and referrals. Both referrals are absolutely appropriate, and the cause of your fast heartrate and shortness of breath should get figured out as well. Thanks so much for the feedback, and I hope you start feeling better as the Prednisone starts to work.

bellaswan9091 12-30-2012 11:15 PM

Re: Elevated CPK Level
 
I wish i could get down to a even a lower dose of the steroids but per my doctors today looks like im stuck at 40mg for atleast 2more months .....wondering if/when radiation therapy will ever be suggested to me...did the radiaton help at all?

hopefloats36 02-22-2013 03:35 AM

Re: Elevated CPK Level
 
Hi Blessed to be me,
Was wondering how you have been doing. We have some similar issues. Was it ever determined why your ALT and AST were elevated? Mine are more elevated than one year ago...still no answer why. Very frustrating indeed. Hope tohear back from you.

blessedtobeme 02-22-2013 01:04 PM

Re: Elevated CPK Level
 
Well, I took 60mg of Prednisone for a couple months, then tapered down. Doc started me on Imuran but after 3 weeks my ALT had climbed to 101 so they put me back on Prednisone and off the Imuran. Seeing a liver specialist next week. Have noticed that the joints in my feet are seriously changing and painful since stopping the Imuran. But what can you do? Liver damage to me is much more serious. Of course, the ALT and AST have gone back down since stopping.

How are you doing? Having muscle weakness?

blessedtobeme 02-22-2013 01:10 PM

Re: Elevated CPK Level
 
Well, I took 60mg of Prednisone for a couple months, then tapered down. Doc started me on Imuran but after 3 weeks my ALT had climbed to 101 so they put me back on Prednisone and off the Imuran. Seeing a liver specialist next week. Have noticed that the joints in my feet are seriously changing and painful since stopping the Imuran. But what can you do? Liver damage to me is much more serious. Of course, the ALT and AST have gone back down since stopping.

How are you doing? Having muscle weakness?

hopefloats36 02-25-2013 10:39 AM

Re: Elevated CPK Level
 
Yes, I have muscle weakness/fatigue in my proximal muscles. My CPK was never elevated. A muscle biopsy confirmed inflamatory myositis with type 2 muscle fiber atrophy. The myositis Dx was later questioned, but the biopsy was never repeated. Prior to this I suffered with active Epstein-Barr Virus, Hashimoto's Thyroiditis, and Adrenal Fatigue. I was never treated for the muscle weakness. No steriod med's to consider when trying to figure out why my liver enzymes are elevated. I'm trying to figure out what other connections there might be. I have another ultrasound scheduled. Last year the abdominal ultrasound didn't reveal anything other than a fatty liver.
I hope you are doing better. Thanks for responding.

ladybud 02-25-2013 12:28 PM

Re: Elevated CPK Level
 
The ALT and AST enzymes can come from muscle OR liver tissue. So the lab can "fractionate" the enzymes, meaning separate them into liver vs. muscle to be clear on where the elevation is originating. A GGT is more liver specific, as is bilirubin elevation. If there is truly something going on in the liver, it would make sense to consider autoimmune hepatitis, for which an anti-mitochondrial antibody can be tested on the blood. Given you have some autoimmune problems, that could fit in.

hopefloats36 02-25-2013 05:18 PM

Re: Elevated CPK Level
 
Ladybug, Thank you for your feedback. Last year I did test negative for a hep panel. I'm not sure that the enzymes were fractionized last year or not and GGT doesn't sound familiar so I don't think that was ever done. I'll ask if they were done. I do remember the bilirubins were high along with the ALT and AST though. More things to ask my doc about so I appreciate the information you gave me and I'll follow-up on it. I was tested 2 and 3 years ago for multiple mitochondrial diseases when the neurologist was looking for other reasons for muscle fatigue and pain besides polymyosits. Again, negative..good thing from what I understand.
I know there has to be a reason for the elevated enzymes...and this is going on for more than 2 years now. Where to go from here though. If the ultrasound comes up negative again I feel I'll be forgotten for another year....until the next annual physical. It's frustrating!
Thanks again for your feedback. I appreciate it very much.

blessedtobeme 02-26-2013 02:12 PM

Re: Elevated CPK Level
 
That must be why my doc was more concerned with how high the AST was compared to the ALT. I have been having the hepatic function tests every 2 weeks but now that the Imuran is stopped - it is going back to normal. I go tomorrow to see the Rhuemy and the liver specialist. I'm ready to stop the meds totally. I hate how they make me feel. I can say that because my muscles and bones haven't gotten that bad. This may change but I'm kind of hoping it is just a nightmare and sometime I will wake up.

We have even had our 2 story home on the market to sell for the last 2 months to get a single story home and can't find one. I wish I could prove them wrong.

ladybud 02-26-2013 06:22 PM

Re: Elevated CPK Level
 
I just moved from a two story home where we had lived for 22 years to go into a single floor home. Good decision! It is helping a lot. I hope you find something soon. For hope floats, I would ask Dr to repeat the anti mitochondrial antibodies since it was done before the liver enzyme elevation became a problem.

hopefloats36 02-27-2013 10:22 AM

Re: Elevated CPK Level
 
[QUOTE=ladybud;5138853]I just moved from a two story home where we had lived for 22 years to go into a single floor home. Good decision! It is helping a lot. I hope you find something soon. [U]For hope floats, I would ask Dr to repeat the anti mitochondrial antibodies since it was done before the liver enzyme elevation became a problem.[/QUOTE][/U]

Ladybud,
You are a wealth of information. Do you have a medical background?
I will add the question of repeating anti-mitochondrial antibodie labs to my list for the doc. I do remember at the time the tests were run, there was issue with how expensive they were. I appreciate that you weigh in for myself and for others. I have noticed that you are generous with your time and insight. Many thanks and best wishes to you. :-)


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