Hi - sorry, two posts in one day but as mentioned I'm new to this CSS club! Can I ask if anyone has investigated whether Nacula could be a long-term alternative to get off steroids, and other immuno-suppressants (in my case Methotrexate)? If so, is Nacula available on NHS for EGPA sufferers?
Thanks and wishing everyone well 
Nucala is available on the NHS for severe asthma.
Hi thanks for the response. So does that mean it is not available for EGPA? I thought I had read somewhere it was being considered.
Hi , Nucala is not available for EGPA in the uk and so far as I know it isn’t currently being considered for it. However, it is approved for Eosinophilic asthma but at a reduced dosage of 100 mg (as opposed to 300 mg for EGPA in the USA). My wife has egpa and her consultant was able to get her Nucala by demonstrating that she ‘qualified’ under the requirements for Eosinophilic asthma. You might be better off pushing for an alternative mab, Fasenra, which is similar but the dosage for EA and EGPA is the same at 30mg
I was offered Fasenra (Astra Zenica brand name - Benralizumab is biologic) or Nucala(Glaxo)/Mepolizumab either way you have to be diagnosed first with severe or eosinphillic asthma. Plumped for Mepo (assuming can always switch) as nhs only pays for Benra monthly for 3 months and then its bimonthly with its long term usage being a bit undefined as its going through trails still in the USA for approval for EGPA. Figured its best to get monthly treatment as the only end game here is to reduce eosinophils to zero and so reduce reliance on pred to minimal ammounts- thats all either drug will do for EGPA patients as I understand it as well as treating severe/Eosinophillic asthma which I also suffer from. Its simply a steroid sparing treatment for us but both only target eosinophils (anti IL5) which is great for us re rest of immune system. Some speculation also as to whether the 2 months gap later down the line means you would have to increase pred again temporarily. The drug we all need to watch for is what happens in USA with Avacopan- its trialling with GPA at the moment but no reason to assume it would not be effective for other anca vasculitis and would replace steroids completely.. results very promising and may get FDA approval next month.
Hi - I may be moving onto Benralizumab shortly - can I ask where did you get the information that NHS only pays for first three months treatment? Many thanks!
Just to be clear the nhs pays for it all but its only monthly for the first 3 months and thereafter bimonthly. Sorry if that was unclear
Phew!!
My consultant weaned me of steroids over a period of about 3-4 months following immunosuppressant transfusions - I have a 3-4 more to go over the next 18 months. I was glad to be off the steroids as they massively stimulated my appetite. I still have to take a statin, blood pressure pill and low dose antibiotic (whilst my bp and cholesterol are back to normal - they have other impacts according to my consultant). My main issue, is I am not sure how much immunity, I have to Covid and other nasties.
Hi newbie and sorry you are in this crappy club. Where are you being treated? Nucala (Glaxo brand name) or Mepolizumab is not available anywhere in UK for treatment of EGPA..sadly NICE have not yet seen the light. It is only available for treatment of severe or eosinphillic asthma and you have to jump through a million hoops to get it and even then its at a third of the recommended dosage to treat EGPA. I started Mepo yesterday after diagnosis in November and having jumped through hoops gives you and idea of time line. And yes is considered a steroid sparing so a good thing to steer for. Rule of thumb is that you can halve the steroid dosage that keeps you stable. Did they put you straight onto MTX?
Hi EGPAGuy - Yes if you mean MTX = Methotrexate I started on that about a week after the high dose steroids (which started at 60mg but down to 20mg per day at the moment).
I’m being treated in Surrey.
So are qualified for Mepo because you have Eosinophilic Asthma?
You need to get diagnosed with severe or eosinphillic asthma..assuming you have asthma. I started out in Kingston hospital system but got a referral after various frustrations and misdiagnosis and now suck up the long drive to Addenbrookes and back. Havent come across MTX straight off before..but everyone is different. Its important you have a multidisciplinary team that knows about vasculitis..get you heart, brain, lungs and kidneys checked out. They won't want to do it but very important to spot early signs of inflammation in these organs and you need a vasculitis specialist to interpret the results and thats why I go to Addenbrookes -they are all specialists there. I know 2 other EGPA sufferers in local area and we all have different journeys to date. 2 of us are on anti IL5, one on Rituximab and now yourself. If you need to stay local for treatment get a referral via your GP to David Jackson at Guys..he is an EGPA guy but you won't have the multidisciplinary team.
Thank you!!
Thank you both.
I live in the United States and was diagnosed with EGPA last November. I have taken 4 months of 300mg/month Nucala injections. Took months of effort to get Nucala from the pharmaceutical company at no charge. Otherwise, Nucala would cost me $2000/month.
I am reducing prednisone by 1 mg every 2 weeks (currently on 11mg/day) while on Nucala and am on no other medications. This is an experiment to see if Nucala plus a low dose of prednisone is enough to prevent a flare-up of EGPA.
My leg and foot numbness has not improved but seems to be no worse. Seeing a nephrologist soon for kidney function tests.
Will re-evaluate with the rheumatologist in December to see if another immunosuppressant drug is needed or if Nucala plus a low dose of prednisone or no prednisone is sufficient.
Dealing with EGPA is somewhat lonely. Other people don't really understand the illness so I try to be as normal acting as possible, exercise, and eat a nutritious diet.
Hi, where in US r u located? I'm in NJ. Don't know anyone else w this, would like to connect.
I'm in Columbus Ohio having just moved here from South Florida.
Happy to talk.
What town in NJ?
Now in Whitehouse Station, central Jersey.
My daughter used to live in Hoboken although that's probably a different world from where you live.
I read you have no breathing issues now. Yes a huge relief. The asthma part of EGPA can be very scary.
Hi - thank you for responding. It would be great to hear how this approach goes for you - could you post an update as and when? I’m keen to look at Nacula as it seems to be focused on ‘prevention’ more than ‘cure’. Wishing you all the best and while we seem to be a unique band of people at least we have our little community here to talk to! Keep positive. All the best.
I can attest that getting the Enosinaphilic asthma under control def beneficial bc it eliminates that problem therefore lessen need for Predisone. This does not however 'improve" EGPA so Pred still may be needed for inflammation. Either Nucala & Fazenra work, I've had both at recommend dose. No breathing problems at all now, what a relief!
Thanks good to hear
Hi… I’ve had EGPA (CSS) for six years. Last summer I was started on Mepolizimab (Nucala) for severe eosinophilic asthma. In the UK NICE only approve Mepolizimab for eosinophilic asthma. It was withdrawn as a treatment for EGPA some years ago.
Ok thanks. Did it work for you on EGPA side out of interest?
Hi….. well my bloods are largely ok. As I’ve developed
I'm also starting on Mepolizumab for eosinophilic asthma once I've completed a course of Cyclophosphamide (diagnosed with EGPA in July). I'm surprised that it was withdrawn for EGPA. Do you know why? Was it based on cost?
Mepo did not work for my eosiniphilic asthma. I was swapped to fasenra which worked at the beginning until it was dropped to bi monthly injections - by then it just wasn't potent enough. Waiting for xolair - sadly my asthma symptoms have got worse and I have aching bones/joints/ under my arms and earache - my appetite has gone and my bowel habits have changed. My concern is that vasculitis may be on the horizon.
Hi, I realise this was 2 months ago but from what I understand it's a 'game' the consultants have to pay to get you onto Nucala (mepolizumab) for EGPA. I have just had it prescribed on the NHS to treat EGPA but because I have eosinophilic asthma I qualify, although this isn't my biggest issue. The rheumatology and respiratory guys collaborated! Meth is a horrible drug and I've been on that too, just on azathioprine at present but it is having side effects so am on a reduced dose. From what I hear Nucala works well and allows you to get off steroids so here's hoping.
EGPA Diagnosis today
EGPA x Heart
EGPA nerve involvement
