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Old 02-27-2013, 11:47 AM   #16
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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.

 
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Old 02-27-2013, 05:16 PM   #17
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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.

 
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Old 02-27-2013, 09:09 PM   #18
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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.

 
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Old 02-28-2013, 10:47 AM   #19
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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.

 
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Old 02-28-2013, 11:02 AM   #20
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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.

 
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Old 02-28-2013, 11:12 AM   #21
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Re: Elevated CPK Level

I have had all the PFTs and thats what they told us were normal, nothing to worry about. They did decide I have sleep apnea and in fact, I thought all along it was my husband's snoring that kept me awake, when my interruptions were more severe than his. Who knew.

 
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