← Return to Pachymeningitis: Anyone else?
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Replies to "Hi! I am new to this site. My husband had vertigo and hearing loss and was..."
No matter how bad I feel , I am humbled by what you and your husband are going through. I hope and pray that you both will get better.
I am 66 old male and 2 years ago had a seizure and went blind in my right eye. Have since regained vision. I am diagnosed with hypertrophic pachymenigitis and P Anca vasculitis but this was just the closet thing they could tag it with,and treat me, they really have not seen my issues before. I go to UTSW in Dallas, Tx I was started on 100mg daily doses of prednisone and after 3weeks given a dose of cytokines chemo. And released. Stayed on prednisone for almost a year gradually tapering down. I was to initially start Rituxamib infusions but my insurance would not cover so my team put me on Cellcept 2000mg a day. Have been on that for little over a year now and still in remission but the pachymenigitis is still present in the mri. I deal with bouts of crushing fatigue which have no reason for coming on sometimes..can last 1 day or several..I also deal with imbalance and continually run into really or have little jerks that are totally involuntary. I went thru physical therapy, helped a little. When I get tired in the evening my symptoms are worse but when I wake in the morning they are bad too so go figure. I might get to reduce my Cellcept this February, I hope so as it gives me gastrointestinal problems and I think contributing to my fatigue. I also have stage 2/3 CKD brought on probably by some of the initial meds I was on. Can’t say enough good about UTSOUTHWEST, they saved my life!!!
Hello. Like your husband, I too have had hearing loss and vertigo issues. Five months ago I lost almost all the hearing in my left ear. I'm told it is meniere's disease, but my symptoms started around the same time my pachymeningitis was discovered, so I believe they could be linked. I also have issues with double vision after reading for a short time (may be related or not). The neurologists I've been to so far are stumped. Were you and your husband able to find treatment that was helpful?
Thank you in advance.
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.