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Purplemoonchild's Post

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Purplemoonchild

Updated 1y ago

Seeking Advice on Sarcoidosis and Fibromyalgia Symptoms

Had ACE level in March of 95. As of last week, ACE was 97. Symptoms are fatigue, joint and muscle pain. Lack of sleep due to joint pain. Two nodules less than a centimeter and tiny granuloma in lungs. other symptoms make me suspect fibromyalgia possibly: tender points. But I also have an elevated ANA which was 1:320 in September and March but as of last week was 1:640. Sjogrens was suspected but now ruled out. Has anyone been prescribed hydroxychloriquine for sarcoidosis? Has anyone been awarded SS Disability for sarcoidosis?

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Neuco

2y

I received Disability for Sarcoidosis, but also had a number of other conditions on top of it that factored in (psychological and physical). From what I understand, Prednisone or Methotrexate seem to be more prominent medications for Sarcoidosis, from the group's I've been in. I've only heard of hydroxychloriquine being used for Lupus, whereas we tend to get the off label uses of Rheumatoid Arthritis meds. 😅 Is that what your doctor is planning on putting you on?
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Cat1

2y

My ACE level is 27 can that be correct with sarcoidosis. Is it bad or good?
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Neuco

2y

Basically any number between 6 to 67 is considered normal. You could have Sarcoidosis, but 50-80% of patients with active Sarcoidosis have an elevated ACE level. The golden standard is generally a biopsy of the granulomas, but that requires finding them- which isn't always easy if you're not presenting with pulmonary symptoms. What is your doctor saying?

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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