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SEVERE REFRACTORY EOSINOPHILIC ASTHMA

Hi, I have severe refractory eosinophilic asthma and had been promised treatment with Mepolizumab once approval from NICE had been granted.

However over two years on and despite countless acute exacerbations of my asthma requiring high dose corticosteroids I am still not receiving the biological treatment..Mepolizumab..which I desperately need and was promised over two years ago.

My health is deteriorating rapidly and I have two consultants who are supporting my request for this treatment as well as my GP. Does anyone know of a respiratory consultant who is open to the use of Mepolizumab for severe refractory eosinophilic asthma please as we keep coming up against a brick wall here.

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It is hard some times dealing with Dr's .. What type of problem is that never heard it before.... But I hope you get the help you need...

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NICE approves mepolizumab for refractory eosinophilic asthma

By Lisa Lytle on the 25 January 2017

mims.co.uk/nice-approves-me...

nice.org.uk/news/article/ni...

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I was promised treatment with Mepolizumab over two years ago whilst they were awaiting NICE approval but it’s being withheld from me for reasons nobody, including my GP & another respiratory consultant can fathom....I am becoming increasingly ill with acute exacerbations of asthma as well as full blown asthma attacks and am almost constantly on high dose corticosteroids. HELP!!

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On the MIMS page there are several criteria which a patient has to meet for this treatment to be started; perhaps you don't meet these?

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I meet all the criteria. Have had more than a dozen acute asthma exacerbations all required high dose corticosteroids & received my diagnosis of SREA in 2013. Have been attending respiratory consultant and so called asthma specialist in difficult asthma clinic since 2013.

Thanks 👍👍

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Sorry...I meant this year obv..just read message back ...🙈🙈

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Hi sorry to hear that you’re stuck in the system.

Are you under a respiratory specialist hospital? That was the biggest wait I had to go through (2years), as my local wanted me on xolair, but they couldn’t give it to me under ‘new’ NICE guideline (has to be given at a specialist hosp).

I’m starting mepo next Friday, having started to get issues with xolair. I had to wait for the difficult asthma protocol to be done, then once they agreed I have severe asthma (atopic and eosinophilic) then I was put on the biologicals.

This could why they haven’t given it to you yet, if you meet all the criteria 🤷‍♀️

Hope they sort things out for you soon xxx

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Hi Emma, thank you for your message. Yes I attend difficult asthma clinic which is only place that can dispense Mepolizumab where I live. It has to be from a specialist respiratory centre apparently which is so frustrating as my other respiratory consultant does not have the prescribing rights for Mepolizumab but said if he dud I would have it in a heartbeat.

Not sure that the other consultant who is withholding it from me is on safe ground legally as apparently they have to make a case for NOT giving it to you once you have satisfied the criteria..which I have done.

Good luck for next Friday 👍👍👍👌👌🙏🙏💐💐

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Hya Rainbowbrite33

Its been a while since I made a comment on this site but after reading your plight I felt i needed to say something..!!

It was like reading my own srea story, i feel so sorry for your plight..!!

You have definitely met all criteria they instill on you before the injection..

My life was crap.... Asthma attacks, hospital admins, 7 months off wrk, course's of steroid tabs for months..!!

I'm slightly confused to why you have 2 asthma consultants..??

You will NOT get anywhere if ya dont start insisting on help, I was getting worse and in one consultation i just thought bugger this im not prepared to put up with it. So i gave him a piece of my mind and insisted on help..Any sort of help...

I asked what is the reasons for not starting Mepolizumab and he answered finance..!!

"Not good enough"!!!

They have a budget i know but your life is more importa

I left that room with a promise that he would start me on injections..!!!

I'm now on my 11th monthly injection, and i am lucky it has turned my life around, back at wrk, seeing friends, holidays etc...

So ditch the one who cant help you with Mepolizumab and start insisting on answers and help they bugger about and its gone on long enough!!

I really hope you can get on mepolizumab, but you need to start sticking up for yourself and bloody tell them...!!

What have you got to lose??

Sorry for being brutal, but its a truly horrible situation and for a consultant to think hes god does not wash..!!

I truly hope you get a good outcome, all the very best..!!

D..

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Hi Bashsu01, thank you for your message & well done on fighting to get treated with Mepolizumab 👌👌👍👍

I have been so so many corticosteroids that they have caused posterior subcapsular cataracts and we have had to go privately to have the cataracts revived and new lenses. No doctor or consultant ever told us this could happen 😏😏👎👎😕😕😟

Believe me we have been fighting the good fight for me to be given the treatment with Mepolizumab for well over a year now, ever since it became clear that my ‘difficult asthma ‘ consultant had not kept his word. He had promised me this treatment about 2.5 years ago whilst awaiting NICE approval but ever since getting it he has done absolutely everything he can to avoid seeing me at the difficult asthma clinic and refuses to return our telephone calls nor reply to email.

It has gotten so surreal that he actually had a letter sent out for me to see another doctor are the clinic, even though he’s the only one there I’ve ever dealt with for almost 6 years. That’s how cowardly he is being and he’s effectively hiding from my husband and myself tbh.

The other respiratory consultant is lovely but he does not have prescribing rights for Mepolizumab unfortunately.

I see him because there are some other respiratory issues as well as the SREA.. he is very much in favour of my being treated with Mepolizumab as is another consultant and my GP. The ophthalmic surgeon we have chosen to do cataract surgery in both of my eyes has also written a letter of support as he’s unequivocal about the fact these type of cataracts have been a direct consequence of my being treated with long term high dose corticosteroids.

Unfortunately, despite our very best..and these other medical professionals..very best efforts we all have come up against this brick wall. He has not responded to our requests for an urgent appointment to see him and instead had a junior nurse telephone me to say that a “routine appointment will be sent out”

Are you kidding me?!? I could be dead before then ..and I told the nurse to please relay that to him on my behalf since he was not responding to our requests for him to call us. He won’t do it because he knows he’s messed up..I think he hoped I would get fed up trying and just go away..either that or that I would succumb to one of these awful asthma attacks. That way his problem disappears.

My husband has been absolutely amazing and an absolute rock but the total contrast is this coward of a ‘man’ who simply will not sit down with us face to face to even discuss giving me a chance with Mepolizumab.

I have had two heart attacks in two years..caused by the steroids so as you can see steroids are no longer an option for me as they have been their first go to in the past. I need to be given a chance and the frustration is driving myself, my husband and my grown up children crazy.

Thank you again for your kind words...I appreciate it very much👍👌🌺🌸

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Oops..that was supposed to read cataracts removed... certainly not revived 🙈🙈🙈😀😀

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Im so sorry to hear about your disgusting treatment at the hands of a so called professional...!!

Keep going and i hope you have a favourable end to your plight..

All the very best

Dave..

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Thanks a million Dave. Your kindness is appreciated and we are going to keep on fighting for my right to this treatment with Mepolizumab as I fulfil all the criteria that makes me eligible for it and I know that if I had a better asthma consultant than the one I have been saddled with then I would already be on Mepolizumab tbh.

Have a great weekend 👍👍

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