Connect
← Return to Pachymeningitis: Anyone else?
Discussion
Brain & Nervous System | Last Active: Oct 4, 2023 | Replies (104)
Comment receiving replies
Hello @dwallech, Welcome to Connect. It must be really difficult when you are both the primary caregiver for each other and your husband has a rare condition like pachymeningitis. @tracyb posted the following link earlier in the discussion:
-- Rituximab Treatment for Idiopathic Hypertrophic Pachymeningitis:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5392457/
@megmor, @77smith77, @lphillips, @jrt26 and others may be able to offer some suggestions and share their experience.
Replies to "Hello @dwallech, Welcome to Connect. It must be really difficult when you are both the primary..."
Connect
Hi @dwallech
I'm sorry both you and your husband are going through these health issues. It is also good that your husband is not experiencing any headaches. The headaches for me were terrible. There aren't too many doctors that have experience with Pachymeningitis. The only relief I got was rituximab infusions usually given every 6 months which helped reduce the inflammation in the brain mostly around the cranial nerves and dura of the brain as well as other parts of the body. You can send me a private message on where you live and maybe someone can help get you to a specialist that can run more blood test specifically for me it was B cells over producing and attacking healthy organs (autoimmune). The rituximab reduces the 'bad' B cells causing the inflammation. The problem is it also kills the good B cells that help prevent other diseases. So far I've had 4-5 sets of Rituximab infusions since 2017 which the last one being in 2020 and so far my symptoms are controlled with taking gabapentin and tegratol daily for the trigeminal neuralgia.
Hope this information helps.