Recovering from symptoms question

[alan1107]

Hello everyone. I hope all of you are feeling well.

So I was diagnosed November 2022, had my first infusion of Rituxin 12/13/22 and my 2nd dose 12/28/22. My primary symptoms include stuffed nose, coughing, wheezing and shortness of breath. The coughing and stuffy nose have improved significantly, but the wheezing and shortness of breath have not. This Wednesday will be 8 weeks since my second infusion. I am currently on 20mg of Prednisone a day as well. I was hoping my symptoms would be gone by now.

Would anyone mind sharing how long it took for your symptoms to clear?

Thank.

Alan

[Pete]

Hi Alan,

I was treated with cytoxan and prednisone at disease onset. I was diagnosed in January 2011, and it took until June before I felt like I was close to normal. Cool weather and cool water (I was swimming for fitness) seemed to trigger wheezing.

[alan1107]

Thanks so much for your response Pete. That makes me feel a bit better. I'm just so tired of being sick everyday and it feels like it will never end. It's good to know I just need to be patient.

[J@$0N]

I had issues with recovering from medication and side effects and became difficult to discern. I was given 875mg of Rituxan once a week for four weeks and then every 6 months until i went in to "remission". I've been experiencing similar joint pain recently, but cant really tell if the issue is from back related problems or a flare.

[ljeff]

I had issues with recovering from medication and side effects and became difficult to discern. I was given 875mg of Rituxan once a week for four weeks and then every 6 months until i went in to "remission". I've been experiencing similar joint pain recently, but cant really tell if the issue is from back related problems or a flare.

Yes I know what you mean. I finished 2 year treatment in June 2022 but have always had rovings pains in legs <> definitely getting worse now and I have an appointment at the hospital on Wednesday next week so I will get bloods checked to see if this is a flare or not. It seems very hard to differentiate what is the disease and symptoms you have to live with and what is a flare? im not on any prednisone or ritux now so maybe I need a bit more treatment.

[ShellLeighScott]

Hello Alan! Welcome!
My Wegs is/was just upper respiratory and my onset of symptoms were January 2018 with going on Methotrexate, Folic Acid and Prednisone, at end of March, once diagnosed. It is a little hard to remember exactly but I would probably say that it took another 3 months (at least) on the meds before symptoms started going away and feeling better.
I know it can be frustrating and scary! I don't know about the infusion process but follow your doctor orders for your treatment plan and stay diligent throughout.
Let us know how you are doing.

Take care,

[alan1107]

Thank you for your response Shell. Like you my Wegs is just upper respiratory. Had a second Bronc today and it has been determined that my initial does of Rituxin has been a fail. During the Bronc, a Narrowing was found in the apical posterior segment of the left upper lobe and in the anterior segment of the left upper lobe (B3). The narrowing is from a membranous web. The airway lumen is occluded. The Doc that performed the robotic bronchoscopy today says my lungs are approximately 10 times worse than they were in October. Also waiting on lab results and cultures to see where we go from here.