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.

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.

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.

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.

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.

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?

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.

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?

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?

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.

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.

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.

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.

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.

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. :-)

Re: Elevated CPK Level
 

Blessed... with your heart rate being so high, has your thyroid hormone level been checked? Autoimmune thyroiditis (Hashimoto's) can occur along with other AI disorders and sometimes causes hyperthyroidism, which can certainly cause high heart rate and shortness of breath. If you haven't had those checked, it is a simple blood test of TSH, free T3 and free T4, with results in 1-2 days usually. Hope...Thanks for your kind words. I spend time doing this when I run out of energy and have to lie down to rest.

Re: Elevated CPK Level
 

Ladybud, I agree wholeheartedly with Hopefloats36. Thank you for your responses.

I wonder if I'm not losing my mind sometimes. The pulmonologist told my husband and I all was well, they found no reason to believe I have Pulmonary Fibrosis, but when the Rheumy was telling me today she was considering Methotrexate, she noticed the report said I had mild interstitial lung disease. Thus, she switched to Cellcept. Know anything about it? The liver specialist I saw today said that if it raises my liver enzymes they will do a liver biopsy.

Re: Elevated CPK Level
 

Dear Blessed, It makes me so angry that Drs tell patients nothing is wrong when their tests show otherwise. They are doing a great disservice when they hide the truth. As much as we want to hear we are ok, we know when we aren't, and having an explanation is better than having problems glossed over and keeping us in suspense, thinking we are just nuts or something. That is why I always recommend people get copies of their test reports, so you can read for yourself what it says.
Interstitial lung disease occurs in many of the autoimmune diseases, especially RA and lupus. It is an insidious process that causes pulmonary fibrosis (scarring of the lungs) over the years. Methotrexate can cause interstitial lung disease as a side effect, so your rheum was right in avoiding that medication. I would ask for a copy of your report and pulmonary consultation report. I am sorry you found out about this as an incidental "discovery" by your rheum. You should have been told the truth. Interstitial lung disease is another manifestation of inflammation in the connective tissue in the lung, and it interferes with oxygen exchange and reduces lung capacity, so taking a deep breath gets harder and oxygen levels in blood may be reduced. I would consider seeing a pulmonolgist who specializes in ILD so you get the best early treatment possible.

Re: Elevated CPK Level
 

Thanks, Ladybud. It seems I live in a constant state of doubt. My test results sometimes, reflect definitive answers, then the next time, nothing as if it were imagined. I think even my son, who is a doctor, wonders how they can diagnose me when this happens.

it is making me crazy. My main concern was the fatigue, pain, and shortness of breath. My mom and 4 of her siblings died of Pulmonary Fibrosis, plus my brother has it. So it makes sense that there is a history of autoimmune in my background.

Sometimes, I wonder if it would be best to just let the disease take it's course rather than taking all these nasty drugs.

I will ask for a copy of the pulmonary consultation report. Thanks for suggesting it.

Re: Elevated CPK Level
 

Please also ask to get your thyroid levels and antithyroid antibody levels checked. That set of tests could help explain the shortness of breath (to some degree), the fatigue and fast heart rate. All lab values fluctuate, so they will be different each time. Sometimes the baseline is just above normal, so the results fluctuate between normal and elevated. This is not unusual so don't let it bother you. Have you had pulmonary function tests done by the pulmonolgist? That will give you important info about your lungs too. I absolutely would look for reasons for your symptoms and treat what you can. Your quality of life depends on it, so please don't give up or give in to the diseases.