Hi Joni, I live in Auckland and was diagnosed in 2016. I went through the same protocol. I am doing well. Managed to VERY SLOWLY get off prednisone and am now on low dose methotrexate. I have two numb legs from the knees down to the toes and a numb left hand. Not ideal but better than my Dad who died at 61 of the EGPA as they had no options to treat other than prednisone which didnt work well for him. We are lucky we have the 'Gold Standard' - Cyclophosphamide with high dose prednisone. Please contact me if you need any support Cheers, Leonie
@leoniesnorton Welcome to Mayo Clinic Connect! We’re glad that you found this site. And you’ve given such a positive report on your autoimmune disease! I certainly hope that you’ll stick around and continue to help others!
I am fortunate 3 shots of Nucala kept me under control (over last year). We recently switched to Fasenra (1 injection per month) which seems to be keeping me under control. It was recently approved for EGPA. I believe it will be given 1 per month unlike the dosage for other asthma subtypes, but check with your doctor.
I am fortunate 3 shots of Nucala kept me under control (over last year). We recently switched to Fasenra (1 injection per month) which seems to be keeping me under control. It was recently approved for EGPA. I believe it will be given 1 per month unlike the dosage for other asthma subtypes, but check with your doctor.
I have been on NUCALA for EGPA for over a year, which has done a good job of controlling symptoms and allowed me to slowly wean off of prednisone. What made you switch to Fasenra?
I have had difficulty this winter with sinusitis, almost like my earlier years prior to developing full blown EGPA . Tried all the usual sinus rinses, (even with budesonide in it, ) also antihistamine ( dried me out but did not stop congestion), XClear nasal spray is most helpful. Adding a humidifier to the bedroom helped a lot, and I sleep with bed wedge to raise the level of the head. I am taking Famatodine 20 mg (Pepsid) for a possible condition of silent reflux which was mentioned along the way of my journey. I had dismissed it since I do not have acid reflux often enough to treat, or so I thought! I will let you know if this improves my voice, little cough, blocking Eustachian tube, loss of sense of smell, loss of sleep from waking up often, etc. EGPA provides a litany of complaints, doesn’t it? I know others out there have far worse and am grateful for Nucala.
Good luck in zeroing in on your ailment and a treatment. We are all in this boat together, rowing hard!
MTH13
I have been on NUCALA for EGPA for over a year, which has done a good job of controlling symptoms and allowed me to slowly wean off of prednisone. What made you switch to Fasenra?
I have had difficulty this winter with sinusitis, almost like my earlier years prior to developing full blown EGPA . Tried all the usual sinus rinses, (even with budesonide in it, ) also antihistamine ( dried me out but did not stop congestion), XClear nasal spray is most helpful. Adding a humidifier to the bedroom helped a lot, and I sleep with bed wedge to raise the level of the head. I am taking Famatodine 20 mg (Pepsid) for a possible condition of silent reflux which was mentioned along the way of my journey. I had dismissed it since I do not have acid reflux often enough to treat, or so I thought! I will let you know if this improves my voice, little cough, blocking Eustachian tube, loss of sense of smell, loss of sleep from waking up often, etc. EGPA provides a litany of complaints, doesn’t it? I know others out there have far worse and am grateful for Nucala.
Good luck in zeroing in on your ailment and a treatment. We are all in this boat together, rowing hard!
MTH13
I was tired of receiving 3 injections of Nucala (but my doctor said the company was looking into a single injection of 300 mg). My literature research indicated Fasenra was as effective at lowering the Prednisone dosage with a single injection, but requires a monthly injection. I’m receiving the injection at the doctor’s office so plan B and G cover the cost, but none the less, if a less expensive medication works as effectively I’ve opted to try it, I can always switch back. Hope you begin to feel better from the winter issues. A win for us is being off or reducing the Prednisone dosage and future side effects.
Connect
Connect
Like
Helpful
Hug
@leoniesnorton Welcome to Mayo Clinic Connect! We’re glad that you found this site. And you’ve given such a positive report on your autoimmune disease! I certainly hope that you’ll stick around and continue to help others!
-
Like -
Helpful -
Hug
1 ReactionI am fortunate 3 shots of Nucala kept me under control (over last year). We recently switched to Fasenra (1 injection per month) which seems to be keeping me under control. It was recently approved for EGPA. I believe it will be given 1 per month unlike the dosage for other asthma subtypes, but check with your doctor.
-
Like -
Helpful -
Hug
1 ReactionI have been on NUCALA for EGPA for over a year, which has done a good job of controlling symptoms and allowed me to slowly wean off of prednisone. What made you switch to Fasenra?
I have had difficulty this winter with sinusitis, almost like my earlier years prior to developing full blown EGPA . Tried all the usual sinus rinses, (even with budesonide in it, ) also antihistamine ( dried me out but did not stop congestion), XClear nasal spray is most helpful. Adding a humidifier to the bedroom helped a lot, and I sleep with bed wedge to raise the level of the head. I am taking Famatodine 20 mg (Pepsid) for a possible condition of silent reflux which was mentioned along the way of my journey. I had dismissed it since I do not have acid reflux often enough to treat, or so I thought! I will let you know if this improves my voice, little cough, blocking Eustachian tube, loss of sense of smell, loss of sleep from waking up often, etc. EGPA provides a litany of complaints, doesn’t it? I know others out there have far worse and am grateful for Nucala.
Good luck in zeroing in on your ailment and a treatment. We are all in this boat together, rowing hard!
MTH13
-
Like -
Helpful -
Hug
2 ReactionsI was tired of receiving 3 injections of Nucala (but my doctor said the company was looking into a single injection of 300 mg). My literature research indicated Fasenra was as effective at lowering the Prednisone dosage with a single injection, but requires a monthly injection. I’m receiving the injection at the doctor’s office so plan B and G cover the cost, but none the less, if a less expensive medication works as effectively I’ve opted to try it, I can always switch back. Hope you begin to feel better from the winter issues. A win for us is being off or reducing the Prednisone dosage and future side effects.
-
Like -
Helpful -
Hug
4 Reactions