Newly Diagnosed

[sophierenee114]

I'm a 68 year old female diagnosed with EGPA November 2020. I had adult-onset asthma plus years of sinusitis and rhinitis. After sudden excruciating pain in my left leg and foot, I experienced immediate foot drop and numbness. Family doctor thought it was a pinched nerve but neurologist knew it was much more serious. Rheumatologist then diagnosed EGPA due to my high eosinophil count. Currently on 10 mg prednisone plus 3 injections of Nucala once a month. Foot drop has improved but numbness and weakness have remained.

I have my moments of despair but also know that life is difficult and I must remain positive and pro-active. Just weird having such a rare auto-immune disorder that many doctors have never heard of!

[Tiss]

Welcome to the club. Sorry you are here. X

[Investigator1]

Hi sophierenee114. Your now in our very exclusive club and have just described what we all though when we were first diagnosed, what is it? And why me? you do get used to it though and as time goes by you will see improvements your still young and have a lot of life to live. My advice would be to concentrate on 3 things. 1/ push and push for your treatment and don’t let anybody off the hook, it’s so important in the early stages. 2/ stay so safe during the pandemic, survive basically. 3/ Use this forum and speak to the fantastic people that use it, they have helped me so much. Nick

[EGPAGuy]

Sorry you are here too but welcome to the crappy club no one wants to join. Where are you based - assume USA? Not meaning to pry but here in the UK we can't get Nucala (Mepo) easily and only if we are diagnosed with another condition such as eosinophilic asthma and then only at a third of the prescribed dosage. My egpa is being managed with pred and other immune suppressants have failed to date due to a toxic reaction. I have constant numbness in hands and feet, tiredness and breathlessness..my egpa comes with lung involvement and have also suffered a small stroke prior to being put on blood thinners..hard to say what caused that but have been told egpa makes your blood "sticky" so assuming you are being prescribed something for that as well if only an aspirin a day (75mg). Important you get a multi discipline team to check heart, kidney, lungs and brain for any signs that eosinophils are active because that's where they can cause real havoc! And I echo Nicks comments.Best Lev

[sophierenee114 in reply to EGPAGuy]

I applied to the pharmaceutical company that makes mepolizumab and it took 6 months to get patient assistance as the cost is prohibitive. Just hoping it works but not seeing any improvement yet after 2 months worth of injections.

I live in the United States.

You're so right about pushing the doctors.

Thanks for the encouragement and responding to my post.

[EGPAGuy in reply to sophierenee114]

Yep..and so sorry to hear about what you have been dealing with. And sorry Mepo has not been the complete success story we all hope for. I think Astra Zen do similar assistance in USA for Fasenra - even more expensive - and there is a programme running now to determine which may have best efficacy for egpa . Tried pred and myco so far and had a bad reaction to myco. I was only diagnosed last November after a misdiagnosis of eosinophilic pneumonia by my local hospital. The only drug that has worked for me so far is large levels of pred but you cant be doing that for long (40mg plus/day)..felt great with symptons returning at levels below 30. Numbness has been with me for 2 months now.....this is a great forum to exchange experiences which in turn can prompt questions when pushing doctors. I have a neighbour who also has egpa..what are the chances... and she is getting on great with Rituximab although I have been told its not usually that successful specifically with egpa but good for other types of vasculitis. I think the possible advantage for you being on IL5 inhibitors and lower dosages of pred is that mepo largely targets response just from eosinophils so perhaps leaving other parts of your immune system in place(covid implications obviously). But I am no doctor so could be talking rubbish so please check with your doctors.

[Chipper03]

Hi sophierenee114 It’s so good you’ve found your way to this group, really supportive and I’ve learnt a lot reading others’ experiences. I completely agree with Nick’s comments. Take it one day at a time, I found especially at the beginning, that energy levels went up and down. All the best x

[Painfree61]

I was diagnosed with EPGA in 2019 after suffering with Asthma from my Twenties, I get numbness in my feet and swollen feet most days also. I have had infusion treatment at Addenbrookes Hospital and currently on 5mg prednisolone daily. I had blood tests done on Monday and have a telephone appointment next month with Vasculitis clinic to review my treatment. I hope your treatment is working and your legs get better.

[ElaineRH]

Hi Sophie I was diagnosed with EGPA 3 and a half years ago. After a year on steroids I Was given Mepo and didn’t get on well. Then had Azathioprine and got worse, was started on Reslizumab to which I had an anaphylactic reaction to. Eventually a year ago I was given benralizumab but still didn’t do the trick so 4 months ago they added mycophenolate to the mix plus a few other bits a pieces. There is a lot of damage to my lungs and nerves in my legs, I’ve had one flare since the new regime and day to day life is a struggle. Advice - don’t give up and keep on at the team until YOU are as comfortable as your can be having such a rare and hard to treat condition. Good luck!

[sophierenee114 in reply to ElaineRH]

Appreciate your advice and description of your treatment.

Azathioprine gave me an allergic reaction so discontinued. Sounds like you too cannot tolerate many of these high-powered drugs.

I'm on prednisone and mepolizumab injections now but foot and leg nerve damage seem to be accelerating. I'm probably going to be prescribed mycofenolate but it takes months to be effective?

EGPA is quite a struggle often due to its rare occurrence. You're right though, can't give up and must be pro-active with doctors.

Thank you for responding to my post!

[ElaineRH]

Yes definitely a struggle and just when you think you’re making progress something else happens. I found that once there is a full team of specialists involved ( mine are now all in the same trust) things got a little simpler. One other piece if advice - try to keep as active as you can- I realise that will be hard with the pain issues . I am a rehabilitation consultant and so exercise rehab is a natural thing to do for me. If you can find such support where you live that may help…. Elaine