Hi, sorry to hear you have Hypertrophic pachymeningitis. Your story sounds very familiar, although i have been lucky not to have any seizures ( touch wood ) .Like you i had steroids , it ended up being for 18mths , and recovery from steroids was hard , I had no power !! I still take mycophenolate 1500mg daily ( since 2018) my scans massivly improved in the beginning and each scan has remained stable ever since but we have never managed to completely get rid ! .For me it definitely follows a relapsing/ remitting course- i will have days or weeks of headaches/face stiffness and blurred vision balance etc ( quite mild compared to what it was ) and then it seems to resolve .At the moment its playing up , been a few weeks now ,i have had pressure in my mastoid area and sore face ,had another mri week or so ago so hopefully get some news .At my last appointment we also revisited my bloods to see if we can find out why i have it -,seen as we haven't looked since initial diagnosis, i have the idiopathic form .
Like you random faitigue and balance etc ,but on the whole i am in a much better place than i was .I work full time ,i have 2 teens and i keep up ...just !!!
Things i have found that seem to cause flares is stress and over doing it ( sometimes thats hard to avoid ) I try and have a horizontal attidue to life and do what i can do and not worry about the rest .
I hope you can reduce the mycophenolate- are only discussion has been to increase , i have always been reluctant due to side effects .They are not ideal .Personally though i would rather take them than go back to where i was .
It's good to hear from someone who has the same thing selfishly! It's hard when there is nobody who has any idea what it might be like ..I have to explain to every Doctor , etc what it is and spell it for them .
I hope you get back up to speed , steroids are lifesavers but they are hard on your body .
Good to hear from you .
Take care
Meg