Hi. I was diagnosed with GFAP astrocytopathy in June 2024 after a month of worsening viral symptoms eventually getting to the point where I was running a high temperature, vomiting and fainting. I was admitted to hospital and they carried out various tests - CT, contrast MRI, bloods, lumbar puncture - from which they diagnosed GFAP astrocytopathy with a ddx of Sarcoidosis. 2g IV Prednisolone/day for several weeks before I was discharged on 30mg oral Prednisolone. Been trying to reduce it but can't seem to get below 20mg before I deteriorate cognitively. In Feb I was started on Mycophenolate in an effort to suppress my immune system so I could reduce the Prednisolone. No progress so far so I have now been instructed to increase the Mycophenolate.
In the background, I am also doing other inflammation reducing therapies - hydrogen via nasal cannula, tpbm therapy, nutritional support and I am also about to start LDN. I am also awaiting a referral to see an autoimmune specialist neurologist with a view to undergoing a brain biopsy and metagenomics test which might identify the root cause e.g. bacterial or fungal infection, virus, parasitic etc. i.e. something treatable as opposed to manageable.
Symptom-wise I am stable cognitively but so fatigued I can sleep 18 hours a day and very wobbly and weak. Neuro symptoms include burning to limbs and reduced sensation, as well as increasing weakness in limbs e.g. gripping is becoming a challenge.
Best of luck to you all with your journeys. Please keep this thread updated as there is so little known about this disease that we need each others inputs and experiences to grow our knowledge.