We live in Tennessee and my husband has been dia, with a very rare disease called pachy meningitis he is being treated in Nash. Tn. took a long time to get a name for his diease most people and Doctors haven’t ever heard of it he is looking for someone to share stories and treatments with being is has no clinical studies it is so rare! has anyone ever heard or know someone that would be willing to share information about this disease even if you are a professional neuro doctor is ok!!!
Interested in more discussions like this? Go to the Brain & Nervous System Support Group.
I was diagnosed several years ago, but have never been treated as followup MRIs showed no progression and I want to stay away from the standard treatment by steroids. I have mild headaches, neck stiffness, blurry vision in one eye and hearing loss, but none of it is debilitating as of yet. I do have a question about the rituximab. I understand it has been effective. Does insurance cover it? Cost? Also does anyone know if it can be used without failing with steroids first?
@tracyb I have PPO insurance and they first denied rituximab because they wanted me to try other medication like azathioprine, however, my doctor spoke to the insurance provider due to my type 2 diabetes, other medical issues and the extent of the Pachymeningitis which spread throughout the dura (right and left side). If your doctor can give the insurance a good case on starting with rituximab then it should be approved. If not, I also had called Genetec directly and they were willOmg to help pay or even pay in full If you qualify. The drug cost over $15k. I’m not sure how much the hospital charges for their cost of the infusion. Hope this helps.
Thanks so much for responding. I expect to have to get treatment at some point. The list of possible side effects of the rituximab infusions is scary. Your experience?
@tracyb I haven’t had any side affects at all. Only thing is I have to be very careful around young kids and now with covid. So distancing myself and self quarantine as much as possible since my immune system is low for the next 6-9 months.
Thanks. So nice of you to reply. Your info is very helpful and comforting!!!!
My daughter was diagnosed with Pachymeningitis at the age of 12 she is the youngest case in North America she is now 25 and is having serious complications. I'm looking for a Specialist who specializes in this rare disease. Please help.
I have recently created a go fund me page for her to see if I can get her to the Mayo Clinic. We live in Canada.
I was diagnosed in 2018. I was seen at Wake Forest Baptist Hospital in NC then at Duke also in NC. However, Mayo is by far the best hospital …..what are her recurring symptoms?
Thanks for the reply. Her reoccurring symptoms are pain throughout her spine and body. Tingling in the feet and hands. Her RA number continues to sky rocket. She is now having nose bleeds. She gets bruises all over her body.
Her vision continues to worsen and her liver is in stage 1 failure. They now want to biopsy the tumor in her brain. She has constant headaches.
Her legs gave out on her the other day and she fell down the stairs.
She is in chronic pain always.
Hello @scaredmomma and welcome to Mayo Clinic Connect. I am so sorry to hear about your daughter's worsening symptoms, and I certainly understand you are scared.
I am glad to see that @helena49 has already connected with you to share a bit about her experience.
Since you mentioned your interest in coming to Mayo Clinic, I want to share this link to request and appointment. They will review your daughter's medical records and history, and discuss with you treatment options.
How soon were you hoping to have her seen and are you still in touch with your current doctor on her declining health?