Hi
Does anyone know what is happening with Mepolizumab (trade name Nucala)? I think it was rejected by NHS for England but approved for Scotland. Is there anymore meetings etc or information on it. I am desperate. Been on high dose of steroids for over 8 years now, my body is going, I cannot tolerate oral steroids so this drug may be my saviour. Had chemo, not working anymore. Read so many good things about this drug for years for people with EPGA. Thank you.
All I can find is this:
scottishmedicines.org.uk/SM...
from 13 June 2016.
But it is restricted use - to severe refractory eosinophilic asthma in adults.
This
vasculitisfoundation.org/mc...
says the study for EGPA and CSS will only just have finished so the results will not yet have been fully evaluated and published - so there can't have been a submission for them for approval for use in EGPA or CSS.
Since it is available for other uses it may be worth speaking to your consultant to investigate the possibility of off-label use but then you have to look for funding and I have no idea what the situation is for that in the UK at present - dire I imagine if the rest of the NHS is anything to go by.
The list price for it in the UK is £840 per dose - in asthma it is used 1x per month, so about a third of the price of in the USA where it was slated as greatly overpriced. There is a 0% copay program in the US but I have no idea if there is an equivalent in the UK - I did find a link to the GSK site but it was only for healthcare professionals and the patient one was useless.
Oh thank you very much for you information. I will speak to my consultant again next week. I do have EPGA/CSS and severe refractory eosinophilic asthma too.
Have they ever given you Rituximab as it is licensed for ANCA associated Vasculitis which CSS/EGPA is a variant of.
Yes, had lots of Rituximab, was wonderful at first but not working now. Relying on monthly steroid infusions and low dose of Hydrocortisone, but that not working now and I have so much pain/bowel/muscles/sweating/cholesterol issues that are being investigated. Answer is get off steroids, but without them I would be in hospital. Never mind, still breathing hanging on for this new drug. Thank you.
Mitz, where are you seen. The Vasculitis clinic at Addenbrookes headed by Dr David Jayne have been running clinical trials into Campath for EGPA. As EGPA is one of the rarer Vasculitis Variants it might be worth getting in touch with them.
cuh.org.uk/vasculitis-and-l...
I don't know if they are thinking of trialling Mepolizumab too. Have your Consultants tried an IFR to get you funding?
Yes I am at Addenbrooke's, under David Jayne. He has tried to get me Mepolizumab in the past, I last saw him 3/4 months ago, going next week. Last time he did not know when the NICE meeting was and didn't think it would be approved. He agrees that Mepolizumab may be the answer, this is why I posed my question. Thank you so much for your information. I am a problem case, the medication that helps the EPGA I am extremely allergic to, also allergic to most pain meds, stomach meds too. I am not as bad as others, but really having a rough time. The NHS is in crisis I know. I have really bad bowel trouble, nobody knows what it is. Unfortunately have had to go to 2 hospitals for colonoscopy, one refused to do one, said I was too ill. This been going on since June 2015. GP bad too. Eventually got a colonoscopy. The consultant seemed very good, but she must have forgot my details. I was supposed to be put out, I was not, just sedated and pain meds. Both did not work, I had told the consultant that, it was a mistake and they gave me a med that made me worse, so colonoscopy had to be cancelled. Have to wait until end of November now. She never even looked for Vasculitis, she forgot. Probably overworked. Its been a horror story this past 18 months. Eventually after months got GP appointment, GP shocked, I cannot hardly walk, muscles gone, dire pain and he is telling me to get off the steroids asap. He won't write to any consultant. Also found out the marks I have on my face are probably Cholesterol, he almost freaked out, not had a cholesterol test for 7 years! Sorry, in a bad way at present.
I will definitely ask about Campath, I read Emma's story about that, seems an answer. GP agreed if I stay on steroids much longer I won't walk at all. Not had a bone scan for 4 years either. GP sorting that one.
I cannot take the fighting with hospitals anymore, spent 2 weeks informing the MRI and CT Scan people that I have no veins left. I have a port. 2 weeks ago I had 30 attempts at CT Cannula. These people don't believe me. Then yesterday went to another hospital for MRI, I spent weeks explaining that the dye can be put through my port, they phoned Addenbrooke's too. Was given instructions. Was promised they would have someone to do my Port. When I got there was told they cannot do it, it will block my port. Either we try a vein or you go without the dye. Consultant said it was OK. I went through with it. So, I doubt that it will show up anything like vasculitis without the dye. Today I cannot walk, spent last night downstairs. This is why I am desperate to try something else. I am sure David Jayne will help, I hope so, been 18 months since I could walk out on my own and know I could get back.
Thank you so much for your detailed information. I am sure all the symptoms I have are due to Vasculitis. I forgot to say I swell like a balloon too, get rash and redness before next infusion. My infusion due this week. So I will be fine for a few days. (Steriod).
Hi there,
I have just found this, I am a patient at the royal brompton in London and have recently been told that despite the mepolizumab being licenced and ready to go in April this year it may take a few months to set up a clinic and administer is etc...
I have been told that I should be receiving it by June/July at the lastest!
Hope this helps 
Are you now getting Nucala? At the Brompton? What is/are your underlying condition/s BUT what is the condition they are/might treating for with Nucala?
Has anyone recovered from adrenal deficiency? 
Shortage of Breath with low Immune System
warfarin and steroids
Is it a good idea to take omeprazole long term?
