Hi. I havenít been on here for years. I was originally diagnosed in 2010 and did very well for many years. Iím now experiencing a tough flare up and have been for two months. It started a little over two weeks after my Pfizer Covid jab. Very sudden tightness in chest after hard bike ride. Then X-ray and CT showed new nodules in lungs. CRP was way up and ANCA was positive.
I started on 80 mg of pred. Then two weeks later did the first rituxan infusion (July 14). Things seemed to improve quickly at first, but then stalled and backtracked as I lowered pred to 50. Ears are now plugged and ringing. Some sinus inflammation. Weakness and tingly feeling in hands and feet. Second dose of rituxan was July 30.
This past week has been hard. WG symptoms seem to be worsening when I feel like they should start improving. Pred is wreaking havoc on me emotionally. Has a panic attack the other day. Now taking meds to help anxiety and sleep. Probably talking to psychologist soon too.
Iím just wondering if anyone has some reassuring advice for me. How long till you started to see effects of rituxan after second dose? Do you see setbacks on your road back from a flare? How do you cope? What alternatives exist if rituxan doesnít do the trick and pred isnít holding down the Fort?
Thanks. Iím losing my mind a little as my body acts up.