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Myositis Message Board


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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.
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.
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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