hi ..I was diagnosed with iodopatic Hypertrophic pachymenigitis just over a year ago...after a very long journey and trips to the doctors with headaches, face pain numbness and double vision ....I had a skull based biopsy and the histology proved challenging and took months ..in the meantime I was told it was probably an inoperable untreatable meningioma.i had complete sight loss in the right eye whilst waiting ..was given 16mg dexamethasone but didnt seem to respond, fortunately the cycle i mention later on my sight slowly came back almost like on rewind ! 8 weeks later my left eye started to go,we were quicker with the dex and it responded almost straight away.We also have taken a watch and wait my symtoms had seemed to go in cycles.It had all been on the right side.But I'd started with left sided headaches and a foul smell and scan had showed extensive spread in jan 18..Neurologist started me in 16mg of dexamethasone I've just tapered to 40mg prednisolone and he's started me on mycophenolate tapering up to 750mg twice daily ..steroids are awful ! ..I have lots of symptoms still, neck pain numb face..my right sided face swells ??? ..and my right eye is blurred with intermittent double vision ..Hoping mycophenolate will help..anyone else taking immunosupresent..if so how long until they seem to work ?? any advice welcome. can't belive I've found other people with this!! my neurologist has never treated anyone with it before ...sorry about long boring post!!