Pachymeningitis: Anyone else?

Merry Christmas I would like to hear more about this condition and some successful treatments.
I've been going to multiple doctors, tried to go back to work but I feel like this journey is coming to an end.

Hello, I'm new to this group. I was diagnosed with Pachymeningitis in November 2016 via a mini craniotomy to biopsy dural inflammation first thought to be meningioma in the cavernous sinus area. It was treated with gamma knife twice in 5 years. After the second gamma knife my symptoms of headaches/migraines, dizziness, shooting pain in my eyes, ears and face became worse. 2 years later the MRI showed inflammation of the dura (right and left). I was placed on prednisone taper down starting at 60mg daily. Symptoms got a little better but came right back after I finished the prednisone. So now I just did my first rituximab Infusion and another one in 14 days while on 10mg prednisone. Would like to know everyone else's experience and treatment. Thank you

yes it is lonely and they know so little about this disease. I WAS I could share my phone number and name with you

Hi @jrt26,
My apologies for the delayed welcome. I'm glad that you found this group. Please meet @cgrammie2 and @shosey. Grammie and Shosey what treatments have you had?

JRT, we look forward to getting to know more about and learning about the rituximab infusion treatment.

Thank you very much @colleenyoung! So far the headaches and shooting pains are not very intense. I do still feel the numbness on the right side of my face/head, concentrated more around my eyes now. My right side eyesight is a little worse than a year ago, however, if I rest my eyes and get enough sleep my vision is still good. I will keep everyone posted after the second infusion on 2/28/17. Thank you again for the nice welcome!

I have recently been diagnosed. Had a MRI to search for reasons my hearing has declined, and dura mater thickening was discovered. Constant mild headache and some neck pain. Also eyes feel tired constantly. I see that you have been on the forum since 2012. My neurologist took a wait and see approach as I didn't have a headache then. I would like to find a teaching hospital that has some experience pachy meningitis. Do you have any suggestions?

Hi @tracyb
My doctors are at UCSF San Francisco CA. I think I am the most recent and probably only case of Pachymeningitis. It was first thought to be a meningioma and I had two gamma knife treatments within 5 years. The shooting pains got worse and always trouble with my eyes and numbness on the right side of my face. Then in October 2016 the MRI should inflammation all over my dura. They did a mini craniotomy to get a biopsy and that is when I was diagnosed with Pachymeningitis. I was placed on prednisone for a few months and then had rituximab Infusion x2 last month. So far the pain has been subsiding daily. The prednisone side effects are the only downfall and I've been off prednisone since 2 weeks ago. Getting better slowly.

Hello - I have just been diagnosed with pachymeningitis after craniotomy 3 weeks ago. Currently taking prednisone, but as soon as the dose was reduced, I had a return of symptoms. Does anyone have any updates on other treatments that may have worked. I know it is early days for me, but I am not feeling good about prednisone. Looking for any advice and experience dealing with this disease

Hi @ginmac,
Welcome to this group. I had 2 Infusions of Rituximab in February 14 and 28, 2017. It didn't work immediately, however, I have been improving at almost 4 months post Infusion. The drug is very expensive and the doctor has to write what other treatments were given and your reaction to the prednisone was. Good luck and ask me any other questions you may have.

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!!