← Return to Sarcoidosis: What treatments have you had with few side effects?

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Profile picture for yturner @yturner

I spoke to my doctor today and my sarcoidosis is active and I was informed that I have new nodules on my lungs. I am still suffering with headaches and with no answers. The sarcoidosis is now on my skin and possibly in nervous system, I am scheduled for a MRI of my brain, neck and spinal cord on the 15th with the possibility of a spinal tap to address these horrible headaches. I have no answers just possibilities laced with new meds. I have just graduated to a third inhaler and possible infusion or Himra. I need to know if anyone has any experience with any of these meds. I am wondering how I will fit it in my life. I am already having a hard time with feeling weak and tired and if any one else is having a problem with a sore stomach or painful defecation.

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Replies to "I spoke to my doctor today and my sarcoidosis is active and I was informed that..."

@yturner I have neurosarcoidosis, and before I was diagnosed 4 years ago, I suffered from severe migraines for over 20 years. Once I was diagnosed and started treatment, the numer of headaches have been cute dramatically. Migraines are one of the many symptoms of neurosarcoidosis.