Well here goes.... My troubles all started in November of 2019 when I flew to Aruba and back for vacation. Upon return, I could not get my ears to clear, thought maybe a sinus infection but after 2 rounds of antibiotics, still had a plugged feeling in my ears... By February 2020 I was having so much drainage and pain in my ears they put in tubes to relieve the pressure. Forward to spring, still unexplained ear drainage and sinus stuffiness. I am a cyclist so we started our outdoor riding. Repeated Sinus infections ensued with only about a week relief in between antibiotics. I noticed fatigue while riding, but wrote that off as getting back in shape and then blaming it on the fact I was breathing through my mouth because I was always plugged up. Finally got the ENT to do a CT scan of my sinuses after months of nothing working. I started noticing a wheezing feeling in my chest on occasion, however, I once again blamed that on Asthma I had as a child. The CT scan showed a severe Sinus infection, however, by that time, I was having severe rheumatoid pain in my hands, knees and feet that I couldn't explain. I got up one morning and just knew something else was wrong. My doctor being on vacation was a blessing. As they sent me to the ER. 7 days in the hospital, lots of tests, biopsy and a Wegener's diagnosis on August 12th, 2020. I was sent home on methotrexate and 60 MG of Prednisone. I am currently still on 25 mg of Methotrexate and 40 MG of Prednisone as my eyes were swelling too much and I had rashes on my legs on 60 mg. First follow-up CT scan showed a solid improvement in the lesions in my lungs, however my doctor feels that they should have been gone not just improved with the high dose of medications I was on. She has recommended that I do a 4 week infusion of Rituxan which is being scheduled. This is all so new to me and I have never been sick in my life, so although I think the list of side effects are scary, I also feel like it is my only option to get this suppressed. My infusions are to be once a week for 4-5 hours each time for 4 weeks.

Has anyone else done that type of Infusion that can share how it made them feel? I am staying on the methotrexate while doing this as well as the prednisone and can't image more swelling and side effects. I am eating very clean and back to exercising several days a week. I was feeling pretty good until the last couple of weeks and now I am tired again and my sinus and ears are changing and my toes and fingers are numb again, so I feel like my current treatment is probably not doing the trick as the doctors stated.

I will admit I am still in the little scared, a lot of unanswered questions stage, but I am a fighter and I will get this in remission as I have a new granddaughter and a lot of life left to live!

Thanks for listening - Christine