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.
Good Evening,
I was diagnosed with EGPA two weeks ago. I am currently on 70 mg Prednisone and 100mg Cyclophosphamide. I have vasculitis that creates numbness in my feet and right hand. I would appreciate any suggestions how to cope with this challenging disease especially signs of remission and people’s experiences with numb feet. I can’t walk properly and I can’t drive at the moment.
Hi there, I was diagnosed with EGPA in 2016. I was put on the same chemo as you for several weeks and 1000mg of prednisone IV for 2 days when the PN (Peripheral Neuropathy) started moving up my body. The high dose of pred stopped it after 2 days and I now have PN in my right leg, left foot & calf and my left hand except for my pinky finger! I have been on Methotrexate tablets since then and basically am in what they call a chemical remission. There are other newer drugs for EGPA such as Nucala, Rituximab & others that seem to work well for others. I use some natural health supplements which helped with the neuropathy, especially the sharp pains in the feet that was like walking on glass. Following is a page that gives you list of supplement that you can try. https://www.medicalnewstoday.com/articles/326917
I used a wheel chair for a few months then a walker and then a four pronged walking stick which I still use especially in really bad weather when the air pressure drop drastically and it affects my numb feet badly. I found that magnesium works well at night an hour before bedtime as my feet still spasm and my calves cramp. I have a very small electric blanket just for my feet and calves and have that on during the winter to help my feet keep warm. I still wear two pairs of socks during the day so I had to buy a size up in shoes.
I also went to mobility therapy when I was able to drive, I was using a walking stick at the time but was walking fantastically after a couple of months, once a week. It has been a long slog but I am driving and walking well now, although not long distances & I have a disability card for my car. I am still taking some supps and methotrexate and I still have the PN. I wish you well in your recovery/remission. Do not hesitate to get in touch should you have any questions/support. Facebook Groups are also good to join for EGPA support.
Hi there, I was diagnosed with EGPA in 2016. I was put on the same chemo as you for several weeks and 1000mg of prednisone IV for 2 days when the PN (Peripheral Neuropathy) started moving up my body. The high dose of pred stopped it after 2 days and I now have PN in my right leg, left foot & calf and my left hand except for my pinky finger! I have been on Methotrexate tablets since then and basically am in what they call a chemical remission. There are other newer drugs for EGPA such as Nucala, Rituximab & others that seem to work well for others. I use some natural health supplements which helped with the neuropathy, especially the sharp pains in the feet that was like walking on glass. Following is a page that gives you list of supplement that you can try. https://www.medicalnewstoday.com/articles/326917
I used a wheel chair for a few months then a walker and then a four pronged walking stick which I still use especially in really bad weather when the air pressure drop drastically and it affects my numb feet badly. I found that magnesium works well at night an hour before bedtime as my feet still spasm and my calves cramp. I have a very small electric blanket just for my feet and calves and have that on during the winter to help my feet keep warm. I still wear two pairs of socks during the day so I had to buy a size up in shoes.
I also went to mobility therapy when I was able to drive, I was using a walking stick at the time but was walking fantastically after a couple of months, once a week. It has been a long slog but I am driving and walking well now, although not long distances & I have a disability card for my car. I am still taking some supps and methotrexate and I still have the PN. I wish you well in your recovery/remission. Do not hesitate to get in touch should you have any questions/support. Facebook Groups are also good to join for EGPA support.
That you so much for sharing your experience. This is so new to me. I really appreciate that you would take the time to share. I live in NS , Canada and was fortunate to have good Rheumatologists in Halifax. I hope you continue in remission as I hope to get there one day. Take care.
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@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!
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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
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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 ReactionsGood Evening,
I was diagnosed with EGPA two weeks ago. I am currently on 70 mg Prednisone and 100mg Cyclophosphamide. I have vasculitis that creates numbness in my feet and right hand. I would appreciate any suggestions how to cope with this challenging disease especially signs of remission and people’s experiences with numb feet. I can’t walk properly and I can’t drive at the moment.
-
Like -
Helpful -
Hug
3 ReactionsHi there, I was diagnosed with EGPA in 2016. I was put on the same chemo as you for several weeks and 1000mg of prednisone IV for 2 days when the PN (Peripheral Neuropathy) started moving up my body. The high dose of pred stopped it after 2 days and I now have PN in my right leg, left foot & calf and my left hand except for my pinky finger! I have been on Methotrexate tablets since then and basically am in what they call a chemical remission. There are other newer drugs for EGPA such as Nucala, Rituximab & others that seem to work well for others. I use some natural health supplements which helped with the neuropathy, especially the sharp pains in the feet that was like walking on glass. Following is a page that gives you list of supplement that you can try. https://www.medicalnewstoday.com/articles/326917
I used a wheel chair for a few months then a walker and then a four pronged walking stick which I still use especially in really bad weather when the air pressure drop drastically and it affects my numb feet badly. I found that magnesium works well at night an hour before bedtime as my feet still spasm and my calves cramp. I have a very small electric blanket just for my feet and calves and have that on during the winter to help my feet keep warm. I still wear two pairs of socks during the day so I had to buy a size up in shoes.
I also went to mobility therapy when I was able to drive, I was using a walking stick at the time but was walking fantastically after a couple of months, once a week. It has been a long slog but I am driving and walking well now, although not long distances & I have a disability card for my car. I am still taking some supps and methotrexate and I still have the PN. I wish you well in your recovery/remission. Do not hesitate to get in touch should you have any questions/support. Facebook Groups are also good to join for EGPA support.
-
Like -
Helpful -
Hug
3 ReactionsThat you so much for sharing your experience. This is so new to me. I really appreciate that you would take the time to share. I live in NS , Canada and was fortunate to have good Rheumatologists in Halifax. I hope you continue in remission as I hope to get there one day. Take care.
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Helpful -
Hug
3 Reactions