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?

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.

@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

@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.

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 🙂

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