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Purplemoonchild

628d

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?

Top reply
    • Neuco

      556d

      @Cat1 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?

    • Cat1

      556d

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

      • Neuco

        556d

        @Cat1 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?

    • Neuco

      559d

      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?

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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