Rheumatoid Meningitis Recovery

[ChiChiCo]

Has anyone out there had rheumatoid meningitis? I was recently treated for it and am looking for others who have had this experience or just experience with recovering from aseptic meningitis in general.

I was diagnosed with RF positive RA in 2012. My disease has been stable on Cimzia for 6+ years.

My symptoms started as episodes of left-side numbness or what a neurologist referred to as Jacksonian March seizures. They first suspected TIAs, then epilepsy. Finally, with a contrast MRI showing meningitis, I got two lumbar punctures to start ruling out all potential viral, bacterial and fungal causes. They ended up assuming the cause was autoimmune and did 5 days of high dose steroids.

I have been instructed to get a follow up MRI in 6 weeks HOWEVER, I am still experiencing persistent numbness in my left face and arm, as well as several other visual/brain symptoms that seem to increase when I'm tired. I finished my taper dose of prednisone and am still on Keppra to prevent seizures.

I would love to hear your experiences, especially if anyone has had rheumatoid meningitis. How long was the recovery? Did you ever relapse?

Thank you for welcoming me to your support group. 💗

[Wheathair]

Hi I’m new to this site but your note is interesting as I had rheumatoid arthritis-like symptoms occur suddenly about a week before my latest meningitis occurrence. In early Oct ‘22, I got sudden onset RA symptoms and a week later was in the hospital with MN for the 5th time.

I am allergic to all NSAIDS which caused the first 3 MN when I was in my mid to late 20’s but these last 2x they believe HPV viral MN. The 4th x I think I was late 30’s and this recent time 53 yrs old. I tested negative for RA and all other possible autoimmune diseases.

Recovery from recent viral MN seemed pretty easy except 6-8 weeks afterward, I started getting brain zaps -like electrical currents zapping the back of my brain and top spine daily for months. The doctor suspected MS but brain and spine scans all came back clear (🙏). Neurologist now suspects complications from Mollarets and trying to get me into Mayo. Praying they will see me.

My rheumatology symptoms were bad for about 4-5 months. They have gotten better but I still have stiffness of hands, fingers, knees at night and if sitting for long periods. Sharing all of that because you’re the first person I’ve heard who has mentioned RA and meningitis together. I hope you find answers and relief.

[TCTC19]

Good morning- I did not have RA meningitis- however mine was also suspected to be “inflammation/ maybe autoimmune”.

I can tell you the recovery is a long one. The fatigue is the biggest and symptoms are worse when you bring yourself to this point. For the first few months I had to be mindful of what I could do and how long. If not my symptoms would return. That could be numbness, pressure, head zaps/ shocks.

So I believe this is what you may be feeling. When I was closely following this group, that seemed to be what was expected.

The one thing that I learned with recovery was that I had to give myself time and patience for me to get use to the new me. I had to slow down ask for help ….. and I had to realize that this is a true Brian injury and give myself grace for healing . I had to choose what I could do and disregard the other stuff.

After about 3-4 months things got better, 7-8 months I was able to work out and gain my strength back.

I hope this help and God Bless!