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← Return to Pachymeningitis: Anyone else?
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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!!
Replies to "hi ..I was diagnosed with iodopatic Hypertrophic pachymenigitis just over a year ago...after a very long..."
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Hey! I had a grand mal seizure 2 years ago and spent 4 weeks in hospital. I lost the sight in my right eye from swelling in my optic nerve. A suspected anca vasculitis had inflamed behind my eye and the dura of my brain. A brain biopsy revealed hypertrophic pachymenigitis and I was started on large doses of prednisone. Swelling went down in my eye and sight returned but had terrible double vision for about 4 months. This diminished and normal now. They initially wanted to have me do Rituximab but my insurance wouldn’t cover(BCBS) so they kept me extended on Prednisone for about 6 months , tapering down and now I am on 1000mg of Mycophenolate daily for a little over a year. Vision pretty good now though Prednisone did a number on my body cataracts, torn rotator cuff. No more seizure and gaining back some of the 40 lbs I had lost. I deal with crushing fatigue that has no rhyme or reason on how it comes on me. I also have some balance issues that come with fatigue. I am a personal trainer and it has been difficult to try and work my way back. Hoping at first of year to be able to cut back on the mycophenolate.