Pachymeningitis: Anyone else?

Hello,
I was just wondering how you did on that infusion medication…I did an IVIG with the medication Octogam (sp), and the side effects sent me to the ER. I had massive migraines, extreme high blood pressure, chest pains, trouble breathing and vomiting. It was awful. I have Sjogren’s Syndrome and Pachymeningitis.
I hope you’re feeling better,
Liz 🙏🏻
I hope you’re

Thank you for your reply.
Sorry to hear you had a terrible reaction to IVIG. I had minor cough and itchiness the first few minutes into the infusion but they stopped the treatment and gave me max dose of Benadryl. Waited about an hour and then they restarted the IV at a much slower rate that worked and was able to finish the full dose but just took longer.
You may be very allergic to these types of infusion medications. I hope you are feeling better too!

Thank You…yeah, I’m very sensitive to a lot of medications. Have a happy new year

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.

I would love to read about that Rituximab Treatment, but that link is broken. Does anyone have that info and maybe can forward it to me?

Thanks in advance.

Hi! I am new to this site. My husband had vertigo and hearing loss and was sent to the ER where they decided to do and MRI. This happened earlier this year in the summer. The results were pachymenigitis. He has an infection in there but has no headaches, thank goodness. Now he is displaying the following: sleeping a lot, bladder incontinence, trouble lifting his legs, some confusion but does not have a headache. He is scheduled for another MRI in order to compare the two MRI's. He turned 72 in July. It is like he is confused a lot. I am going to get him an an appointment with the neurologist as I am scared why this all happened starting this past week. They think it is an infection from when he had MRSA after foot surgery and the blood clots he developed from his groin to his ankle, which there are 3 of them in his left leg. He does wear his compression hose. I am 5 years younger but have had strokes. We are each other's caregiver. He is just totally wiped out all the time all of a sudden. The bladder incontinence was just now and then but now it is about every day. He cannot help it. I did get him incontinence underwear which he does wear. I am very concerned about why the sudden change in the past week and a half to have such a change. The reason he hasn't gone to the doctor is unfortunately I was in the hospital for a day and a half due to a small stroke and I think it was the stress of worrying about my husband. When they happen which this was the 8th one as I have Lupus and Mitral Valve Prolapse and many other autoimmune diseases as well as Antiphospholipid APS. They happen when I am under extreme stress they happen and I cannot talk or use my right side for a day. I am concerned that my husband not being able to hear well at all, and everything else that he has wrong that it happened so fast. He was put on Meclizine for the Vertigo which he tried to wean off of but found out he will always have to take it. He also has Osteoarthritis. He has high blood pressure and has been on heart medication for years. His appetite is the same which is good. I had never heard of pachymeningitis until he went to the ER with vertigo and the MRI showed this and that is when the neurologist spoke to us. He was glad my husband does not get a headache ever, but said if he got one he needed to get to the hospital right away. My problem is, I cannot find much about pachymeningitis as well as my husband's symptoms and if it is the pachymeningitis or something else. When he tries to walk, he is having trouble lifting his feel. When he does walk all of a sudden he is on his tiptoes, leaning forward and almost is going too fast that he looks like he will fall. He doesn't know why when I ask questions. I tell him I am concerned he will fall. He has a cane but only seems to use it at night to get out of bed to go to the bathroom and back which we do have an attached bathroom to our bedroom. I am scared to death because the vertigo when it started he fell into the shower doors as well as pulled a towel bar out of the drywall. It is I want to know from others if they are dealing with these symptoms with their love ones who have pachymeningitis. I had never heard of this until my husband was diagnosed with this at the ER this summer. I feel like I just cannot look up and getting any more information than a little bit that is what I find on every site but it is very little information. Please help me as I feel I am treading water. Thank you in advance

Welcome @zacworld, The link works for me so I'm not sure what the problem is. The page did have another link to the full PDF version of the article. Hopefully this link will work for you.
--Rituximab Treatment for Idiopathic Hypertrophic Pachymeningitis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5392457/pdf/jcn-13-155.pdf

Hello,

I was diagnosed with pachymeningitis about 4 years ago after having an MRI. I'm really hoping to find fellow patients with this very rare condition to share what they have tried and any treatments they may have had. In my case, they've tried doing a CT myelogram to see if there was a leak of my spinal fluid into my skull. The result was they could not find any evidence of a leak anywhere. I also had a lumbar puncture so they could check my spinal fluid for cancer or lyme disease. I was negative for both. I've had two neurologists who don't seem to know how to treat this or where to go from here (probably because of the extreme rarity of this disease). If anyone has any info on this regarding treatments or knows a neurologist who specializes in pachymeningitis (long shot I know, but just in case), please do share.

Thank you.