I was diagnosed with EGPA in February of 2024 after about 14 years of advancing symptoms from sinusitis, adult onset eosinophilic asthma, intestinal issues, and finally chronic pain, weakness, and vasculitis resulting in numbness in my ankles last January. I was at first misdiagnosed as having PMR, but after a month on inadequate levels of prednisone, I was connected to a wonderful rheumatologist who recognized the vascular component and increased the prednisone initially. I was then able to start Nucala, a biologic which lowers eosinophil count and brings symptoms under control. It took 9 months to taper SLOWLY off prednisone. I am doing very well so far. Not a cure, but a very good way to treat EGPA and get on with life. I have had some sinusitis this dry cold winter and tried a quick prednisone taper which restored my sense of smell, eustachian tubes, and blocked sinuses. I am now using nasal lavage and XClear spray nasally to keep them open. I am Very Grateful to God and to my doctor that this treatment works for me.
I hope this helps you to try Nucala and as you taper prednisone, follow great advice on this site for going slowly and try not to get discouraged. The good news is that you have a diagnosis and that there are treatments to work with. I
am very grateful for the help I have received and support from this site.
Hope it helps to know you are not alone and there is hope for good health ahead.
Hugs
MTH13
I was very quickly diagnosed with egpa last November and am currently taking prednisone and doing Cyclophosphamide and am reducing the prednisone its now at 20mg which still makes it hard to sleep, I have bad ( but better than it was) neuropathy in my thumb and next 2 fingers which is the worst part for me. I take steroid inhaler and nose spray as well as a raft of other things, my rheumatologist is good but he confuses he 😢 I have 2 more chemo sessions and then the rheumatologist will decide what drugs to take probably in late Feb Joni from New Zealand
How were you tested for this? I’ve had a lot of tests, but this has never been mentioned. Seen by ENT, neurologists, and rheumatologist. CT scan soon. Which blood test is the most helpful?
Just looked at my chart and saw I had slightly elevated WBC and MPV a few months ago.
EGPA is such a rare disease that VERY few doctors remember it from medical school. If your eosinophils are very high and inflammation in sinuses, lungs, joints etc are consistent with this, it should be considered. I wound up in the emergency room after trying unsuccessfully to control symptoms with bursts of prednisone, so many tests were taken at the same time, giving me a road map to take to the referrals to doctors. I was still misdiagnosed for two months until my appointment with the right Rhumatologist who had a connection with an eosinophil specialist. An eosinophil specialist would be a good start if your eosinophils are high. Mine were over 15%. Nucala has had very low side effects for me and tapering prednisone still took 9 months. As you go to lower amounts, go slowly and space the changes out. This site has great advice on tapering for this and other issues like PMR. Same process.
Ask questions and do your own research for doctors who work with this disease. Not easy but we need to raise awareness in the medical community and find ways to make the pharmaceutical industry make treatments for these orphan diseases more affordable.
Chin up and take one day at a time. Make sure you take your prednisone Early in the morning with food or yogurt to protect your stomach. No caffein helps also . I needed to take Pepsid for acid reflex due to the prednisone. As you get to 10 and lower, sleep becomes easier. Be kind to yourself and then work slow and steady to bring this beast to heel!
Good luck to all of us in this barrel together!
MTH13
Hi folks
Thank you all so much for taking the time to reply.
It is really helpful to hear your experiences as we are all trying to navigate this rare disease .
My own history is fairly similar . I started with adult onset asthma almost 40 years ago . I progressed to increasingly difficult periods of sinusitis and nasal polyps but remained generally well until about 4 years ago. I started having frequent exacerbations of my asthma with raised eosinophils and needing frequent oral steroids . Early 2023 I began loosing weight , had awful night sweats and increasing muscle and joint pain . I was back and forward to GP and hospital but no one was able to ‘join the dots’ of what was happening . I was put on Benrazilumab ( similar to Nucala ) for my asthma but continued to deteriorate quite rapidly . I then developed very rapid heart rate and was finally admitted to hospital via A and E because of this . After a week on coronary care it was agreed the problem wasn’t with my heart but something more systemic . I was transferred to rheumatology ward where I had daily blood tests and every bit of me was scanned . Throughout my time in hospital I received excellent care but doctors remained unsure of a diagnosis .I finally developed the EGPA rash and after skin biopsies was finally given the diagnosis of EGPA .
My disease was considered too severe to be treated with Nucala . I started on 40 mg daily of prednisolone , cyclophosphamide infusion , ritixumab infusion and 3 months later mycophenolate tablets . Twelve months on I am much better , finished taking prednisolone at the beginning of this month and now only take Mycophenolate .
Whilst I am so glad and grateful to be as well as I am I do struggle with being quite severely immunosurpressed and the restrictions and worry this can entail . Any tips or advice from anyone would be gratefully received .
I send my very best wishes to you all that you continue to receive good care and remain well and strong . Take very best care of yourselves .
EGPA is such a rare disease that VERY few doctors remember it from medical school. If your eosinophils are very high and inflammation in sinuses, lungs, joints etc are consistent with this, it should be considered. I wound up in the emergency room after trying unsuccessfully to control symptoms with bursts of prednisone, so many tests were taken at the same time, giving me a road map to take to the referrals to doctors. I was still misdiagnosed for two months until my appointment with the right Rhumatologist who had a connection with an eosinophil specialist. An eosinophil specialist would be a good start if your eosinophils are high. Mine were over 15%. Nucala has had very low side effects for me and tapering prednisone still took 9 months. As you go to lower amounts, go slowly and space the changes out. This site has great advice on tapering for this and other issues like PMR. Same process.
Ask questions and do your own research for doctors who work with this disease. Not easy but we need to raise awareness in the medical community and find ways to make the pharmaceutical industry make treatments for these orphan diseases more affordable.
Chin up and take one day at a time. Make sure you take your prednisone Early in the morning with food or yogurt to protect your stomach. No caffein helps also . I needed to take Pepsid for acid reflex due to the prednisone. As you get to 10 and lower, sleep becomes easier. Be kind to yourself and then work slow and steady to bring this beast to heel!
Good luck to all of us in this barrel together!
MTH13
I'm glad to hear that Nucala is working for you. My doctor started me on Nucala in November 2022 but he had me do 3 injections at once. It proved to be a huge mistake. I broke out into painful bumps all over my legs and feet. That was within 24hrs, I called my doctor asap and he just said let's try another dose next month and see what happens. Well after two more months of the drug I couldn't take the pain and the sores that developed. It was so painful it 14 months to heal. That was with wound care and basically staying in bed and not being able to walk or wear shoes for that time. So be careful of the doses and be sure you immune system is strong.
Thank you for taking the time to share your experiences . The more we understand about treatment options ,and possible pitfalls the better.
I am really sorry to hear that you had such an awful time.
I hope that things are improving for you now and that your doctors have been able to find alternative treatments to keep you well.
Hi again all
I am just updating to share information in case you might find it at all useful.
I am guessing many of you will already be aware of The Vasculitis Foundation but thought I would share this just in case you hadn’t heard about them. I found their website by chance the other day and found it really informative . They have a specific section on EGPA with lots of helpful information. There is a really helpful video on Mepolibumab and Benrazilumab treatments together with info on their research programmes and findings.Also they are looking to recruit as many people to take part in other research - although the foundation is in America and I am in the UK I have still been able to take part online. The more we can all work together to try to find better treatments and ultimately even a cure for these awful autoimmune conditions the better.
Hope you are all keeping well and managing to stay optimistic for the future.
I was very quickly diagnosed with egpa last November and am currently taking prednisone and doing Cyclophosphamide and am reducing the prednisone its now at 20mg which still makes it hard to sleep, I have bad ( but better than it was) neuropathy in my thumb and next 2 fingers which is the worst part for me. I take steroid inhaler and nose spray as well as a raft of other things, my rheumatologist is good but he confuses he 😢 I have 2 more chemo sessions and then the rheumatologist will decide what drugs to take probably in late Feb Joni from New Zealand
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
Connect
Connect
Like
Helpful
Hug
I was diagnosed with EGPA in February of 2024 after about 14 years of advancing symptoms from sinusitis, adult onset eosinophilic asthma, intestinal issues, and finally chronic pain, weakness, and vasculitis resulting in numbness in my ankles last January. I was at first misdiagnosed as having PMR, but after a month on inadequate levels of prednisone, I was connected to a wonderful rheumatologist who recognized the vascular component and increased the prednisone initially. I was then able to start Nucala, a biologic which lowers eosinophil count and brings symptoms under control. It took 9 months to taper SLOWLY off prednisone. I am doing very well so far. Not a cure, but a very good way to treat EGPA and get on with life. I have had some sinusitis this dry cold winter and tried a quick prednisone taper which restored my sense of smell, eustachian tubes, and blocked sinuses. I am now using nasal lavage and XClear spray nasally to keep them open. I am Very Grateful to God and to my doctor that this treatment works for me.
I hope this helps you to try Nucala and as you taper prednisone, follow great advice on this site for going slowly and try not to get discouraged. The good news is that you have a diagnosis and that there are treatments to work with. I
am very grateful for the help I have received and support from this site.
Hope it helps to know you are not alone and there is hope for good health ahead.
Hugs
MTH13
-
Like -
Helpful -
Hug
2 ReactionsI was very quickly diagnosed with egpa last November and am currently taking prednisone and doing Cyclophosphamide and am reducing the prednisone its now at 20mg which still makes it hard to sleep, I have bad ( but better than it was) neuropathy in my thumb and next 2 fingers which is the worst part for me. I take steroid inhaler and nose spray as well as a raft of other things, my rheumatologist is good but he confuses he 😢 I have 2 more chemo sessions and then the rheumatologist will decide what drugs to take probably in late Feb Joni from New Zealand
-
Like -
Helpful -
Hug
1 ReactionHow were you tested for this? I’ve had a lot of tests, but this has never been mentioned. Seen by ENT, neurologists, and rheumatologist. CT scan soon. Which blood test is the most helpful?
Just looked at my chart and saw I had slightly elevated WBC and MPV a few months ago.
EGPA is such a rare disease that VERY few doctors remember it from medical school. If your eosinophils are very high and inflammation in sinuses, lungs, joints etc are consistent with this, it should be considered. I wound up in the emergency room after trying unsuccessfully to control symptoms with bursts of prednisone, so many tests were taken at the same time, giving me a road map to take to the referrals to doctors. I was still misdiagnosed for two months until my appointment with the right Rhumatologist who had a connection with an eosinophil specialist. An eosinophil specialist would be a good start if your eosinophils are high. Mine were over 15%. Nucala has had very low side effects for me and tapering prednisone still took 9 months. As you go to lower amounts, go slowly and space the changes out. This site has great advice on tapering for this and other issues like PMR. Same process.
Ask questions and do your own research for doctors who work with this disease. Not easy but we need to raise awareness in the medical community and find ways to make the pharmaceutical industry make treatments for these orphan diseases more affordable.
Chin up and take one day at a time. Make sure you take your prednisone Early in the morning with food or yogurt to protect your stomach. No caffein helps also . I needed to take Pepsid for acid reflex due to the prednisone. As you get to 10 and lower, sleep becomes easier. Be kind to yourself and then work slow and steady to bring this beast to heel!
Good luck to all of us in this barrel together!
MTH13
-
Like -
Helpful -
Hug
2 ReactionsHi folks
Thank you all so much for taking the time to reply.
It is really helpful to hear your experiences as we are all trying to navigate this rare disease .
My own history is fairly similar . I started with adult onset asthma almost 40 years ago . I progressed to increasingly difficult periods of sinusitis and nasal polyps but remained generally well until about 4 years ago. I started having frequent exacerbations of my asthma with raised eosinophils and needing frequent oral steroids . Early 2023 I began loosing weight , had awful night sweats and increasing muscle and joint pain . I was back and forward to GP and hospital but no one was able to ‘join the dots’ of what was happening . I was put on Benrazilumab ( similar to Nucala ) for my asthma but continued to deteriorate quite rapidly . I then developed very rapid heart rate and was finally admitted to hospital via A and E because of this . After a week on coronary care it was agreed the problem wasn’t with my heart but something more systemic . I was transferred to rheumatology ward where I had daily blood tests and every bit of me was scanned . Throughout my time in hospital I received excellent care but doctors remained unsure of a diagnosis .I finally developed the EGPA rash and after skin biopsies was finally given the diagnosis of EGPA .
My disease was considered too severe to be treated with Nucala . I started on 40 mg daily of prednisolone , cyclophosphamide infusion , ritixumab infusion and 3 months later mycophenolate tablets . Twelve months on I am much better , finished taking prednisolone at the beginning of this month and now only take Mycophenolate .
Whilst I am so glad and grateful to be as well as I am I do struggle with being quite severely immunosurpressed and the restrictions and worry this can entail . Any tips or advice from anyone would be gratefully received .
I send my very best wishes to you all that you continue to receive good care and remain well and strong . Take very best care of yourselves .
-
Like -
Helpful -
Hug
1 ReactionI'm glad to hear that Nucala is working for you. My doctor started me on Nucala in November 2022 but he had me do 3 injections at once. It proved to be a huge mistake. I broke out into painful bumps all over my legs and feet. That was within 24hrs, I called my doctor asap and he just said let's try another dose next month and see what happens. Well after two more months of the drug I couldn't take the pain and the sores that developed. It was so painful it 14 months to heal. That was with wound care and basically staying in bed and not being able to walk or wear shoes for that time. So be careful of the doses and be sure you immune system is strong.
-
Like -
Helpful -
Hug
1 ReactionThank you for taking the time to share your experiences . The more we understand about treatment options ,and possible pitfalls the better.
I am really sorry to hear that you had such an awful time.
I hope that things are improving for you now and that your doctors have been able to find alternative treatments to keep you well.
-
Like -
Helpful -
Hug
1 ReactionHi again all
I am just updating to share information in case you might find it at all useful.
I am guessing many of you will already be aware of The Vasculitis Foundation but thought I would share this just in case you hadn’t heard about them. I found their website by chance the other day and found it really informative . They have a specific section on EGPA with lots of helpful information. There is a really helpful video on Mepolibumab and Benrazilumab treatments together with info on their research programmes and findings.Also they are looking to recruit as many people to take part in other research - although the foundation is in America and I am in the UK I have still been able to take part online. The more we can all work together to try to find better treatments and ultimately even a cure for these awful autoimmune conditions the better.
Hope you are all keeping well and managing to stay optimistic for the future.
-
Like -
Helpful -
Hug
5 ReactionsHi 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
I just looked back at photos of my skin issues. Has that presented as much of a problem?