← Return to rituximab infusion for rare lung disease

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rituximab infusion for rare lung disease

Lung Health | Last Active: Jul 5, 2021 | Replies (18)

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@jrt26

Hello, I also have a rare disorder - Pachymeningitis, which is basically inflammation comprised of Over active B cells all over my dura. I was originally diagnosed with a small meningioma in the cavernous sinus area. Treated with gamma knife but returned after 5 years so treated once again with gamma knife however they treated it for 4.5 hours instead of standard 90 mins. I didn’t feel well for 2 years. Then mRI showed inflammation all over my dura. Doctors did a craniotomy to biopsy the tissue and found ‘Pachymeningitis’. Treated with prednisone for 2 months then came right back after I stopped prednisone taper down. So Rituximab infusion was done for 1x weekly for 4 weeks. The first time they load you up with an allergy medication and Tylenol. It went well. I felt better but so far had to have Rituximab infusion about once a year or year 1/2. It grows back slowly. I do have to be very careful since our immune system is compromised. I’ve had 4 treatments so far since 2017 and doing well. Wear mask even double mask and wash hands often. Hope this helps.

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Replies to "Hello, I also have a rare disorder - Pachymeningitis, which is basically inflammation comprised of Over..."

Thank you for the information. Yes it does help and I appreciate you sharing your story. I am sorry you are going through all of this. I do believe if this works, the infusions may become my new treatment plan. Sincerely, Teammayo 1