rituximab infusion for rare lung disease

@teammayo1 Oh my gosh, I laughed out loud with the do-bee! As in don’t be a “don’t be”. That was from Romper Room! Yikes, flashback….
LOL. Ok, yes, be a Do-bee and make that appointment. I’m sorry the Leukine treatments didn’t help as much as expected.
I think your doctors are on the right track with the Rituximab. As discussed before, it inhibits the production of the B-cells and can help calm the inflammation that causes your reaction. So it could be a valuable asset in getting your lung condition under control, though don’t expect it to work overnight. It is not immediate.

I’m sorry I didn’t see this response right away. When you reply to a specific conversation it’s best to hit reply in the actual comment box. That way the message will send a notification to the intended person. Or when replying post it to @loribmt or any other member using their @-name. That will insure it gets a direct response. ☺️

I’m 100% fine now and living proof of ‘better living through chemistry’. You’re definitely not bugging me at all! I’m here as a mentor to help or offer encouragement any way I can. We become family. ☺️

I’ll be looking forward to hearing about your experience. When is your first appointment?

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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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@teammayo1 Hi and Welcome to Connect, Im not familuar with your paricular Diagnosis But i receive a IVIG Infusion for my Blood to help fight off a virus that plagues me called Parvo b19 and causes my blood counts to be low.
But i do know quite a bit about Mayo Phoenic and my infusions are every 8 weeks. Mine usually take about 3 hours so not quite as long as yours. If I can be any help getting around Mayo Phoenix Please let me know. The Phoenix campus is under construction addind on more floors to Building 3 which is the Building the infusion center is in. Good Luck and all the staff their are just awesome.
Blessing
Dana

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@lphillips @jrt26 @cag may also have some experiences with Rituximab infusions to share. @danab can tell you more about the infusion center at Mayo Clinic in Arizona to help you prepare, too.

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Oh my, you have made me feel so much better. Thank you so much for being positive and truthful. I am going to have my first infusion on Monday July 12th. I will let you know how it goes when I get back. I will try to be a brave Do Bee. lol. Thank you again!!!! Your a wonderful Mentor 🙂

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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

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