Anyone diagnosed with EGPA?

Good morning,
I am sorry to hear about your EGPA
challenges. This is a terrible disease and very often misdiagnosed until damage that may have been minimized has really affected a person. I was diagnosed 10 months ago. My first treatment was prednisone 70mg to 5 mg over 4.5 months with cyclophosphamide. I am currently on 20 mg methotrexate weekly with remission currently holding. I hope you find an effective treatment.

I am sorry you are having so little success in dealing with EGPA. It is a damaging disease and takes time to get under some control. I was diagnosed two years ago after over a decade of gradual advancement in symptoms. I was put on prednisone at 40 mg for a start to halt advancement while beginning Nucala at an infusion center. It took several months to see my eosinophils go down and to start to see improvement. It took a total of 9 months to slowly wean off prednisone to avoid a relapse. Since that point I have been well controlled by Nucala alone. Only my sinuses seem to have their own problems and I deal with them separately. I consider myself very blessed that Nucala works for me but wonder if you were on prednisone for initial support while letting the Nucala take effect? Prednisone quiets the vascular and lung snd intestinal symptoms while waiting for Nucala to control eosinophilia. It takes patience to SLOWLY get off prednisone. This site has very good advice on tapering that I followed when my doctor’s taper was too abrupt and brought back some symptoms. The slower taper worked very well. I am 80 years old in a few weeks and seem yo be doing well on the monthly series of shots.
Were you kept on prednisone initially or only put on Nucala or other drugs? It may have made a difference in outcome. Just my own experience here but we are all in the same boat, rowing hard, and hope we can help each other heal.
Good luck and don’t give up. It is not an easy fix but there is hope!
Wishing you well,
MTH13

Hello, my husband was recently diagnosed with EGPA in Dec/Jan. He just finished his fourth round of Rituximab. He has severe neuropathy in his hands and feet, among other things. Finally getting a diagnosis seemed like the first step in right direction. Can anyone tell us when we will start to see a light at the end of the tunnel? Pain and numbness is most disheartening. Just looking for relief. Any information would be greatly appreciated.

Welcome @johnnsusie, I thought you might like to look through these related discussions in EGPA (Eosinophilic Granulomatosis with Polyangiitis) started by @traverselynn, @georox and @roxy1954, while you wait for others to respond.

-- I have been diagnosed with EGPA since last May.: https://connect.mayoclinic.org/discussion/i-have-been-diagnosed-with-egpa-since-last-may/
-- Anyone else with Churg-Strauss or EPGA?: https://connect.mayoclinic.org/discussion/churg-strauss-or-epga/

Have you seen the information on treating and managing EPGA on the American Lung Association website?
- https://www.lung.org/lung-health-diseases/lung-disease-lookup/egpa/treating-and-managing

Hello @johnnsusie,

I'd like to add my welcome to @johnbishop's. I moved your discussion and combined it with a discussion titled:

"Anyone diagnosed with EGPA?"
- https://connect.mayoclinic.org/discussion/anyone-diagnosed-with-egpa/

As John mentioned, @traverselynn started this discussion and asked a very similar question to yourself and @georox joined as well.

Good evening, I am georox. I wonder if your husband would want to use facebook messenger to communicate with me. It might be easier to get across to him my journey and possible solutions . Paul Gilbert
Facebook
I live Nova Scotia.

@mth13 ,
Thank you for your input on this nasty disease. It is affecting my gum and teeth now.
I was on prednisone before getting
Nucala and Rituxumab. Am taking nothing now while waiting for Fasenra to be approved. I am on Oxy and fentanyl for pain that's it folks.

Next

@traverselynn
I am surprised that they did not keep you on prednisone while waiting for Nucala to work, snd now while waiting for Fasendra. It would help with the pain and keep you from further damage to organs. Usually you are weaned off prednisone as the autoimmune drug takes charge. Is this not the way your care has gone?
MTH13