I am a 57 year old female presently residing in New York and is adding my experience to the journey. I was diagnosed in September 2017 with Necrotizing Myopathy affecting all my proximal muscles. Deep muscle biopsy done in September stated that Statin is the underlying cause. I have not taken that drug nor any type of medication for that reason; no history of Diabetes Mellitus, no Hyperlipidemia, no Hypertension, no significant medical history. I initially did well on high doses of Steroid but after 1 month of therapy the medication stopped working, I was readmitted to the hospital in November and was treated with IVIG and had a Lumbar Puncture done which resulted in leakage and it took 3 days for a blood patch to be done. (That's another story). I relapsed and is no longer able to do most ADLs, ambulation became difficult, and shortness of breath is problematic on cold days. Previously I was ambulatory with a quad cane, was able to climb stairs and was able to do ADLs with minimal assist. I am followed by a Muscle Specialist, a Neurologist and a Rheumatologist, they are all stumped. I am taking 10 mg of Prednisone with Pepcid daily, Bactrim prophylactic three times per week. I also take the following daily: Calcium, vitamins D, C, B6, 12, Zinc and Omega 3,6 and 9. These were not prescribed, I did some research and started taking them when my symptoms first stated in July, my specialists are aware that I am taking them. I have refused to add any Immune Suppressant Therapy because of the side effects and I am not convince that it will make a difference with my disease, needless to say it was highly recommended that I should begin the therapy at least once per week.(Oh by the way I am on a slow tapering of the Steroid). I have also been taking a special tea, a powered drink high in antioxidants as well as low dose CBD (cannabis) since the beginning of December and so far my fatigue is improving, I am better able to tolerate my rehabilitation exercises. My next dose of IVIG is temporarily on hold pending a repeat of my EMG and Muscle Conduction testing which is scheduled for next month..