Brompton mepolizumab injections for severe asthma update

[meganoscar123]

Hi guys just wanted to update you on my visit to Brompton today. My consultant had emailed me about a new drug for my type of asthma (severe eosinophilic asthma) and today I was advised I will be in first cohort of patients to be offered this to block white blood cells that migrate from my bone marrow to my lungs causing massive ongoing inflammtion. BUT the drug, despite being licensed in UK last month, still has many more hoops aparently to jump through re funding/committees etc so they cannot tell me a definate date when it will be in clinic to use. In the meantime I have been told I must now stay on maintenance Prednisolone which is a disappointment but I have to hold out hope that sometime this year this new drug will come available and give the 5% of us with this type of the disease hope! It is amazing that a year ago nothing else could be done only a 'Pred shaped future' and serious airway remodelling with scarring and inflammtion, but now a light on the horizon!!

[Ergendl]

Good luck - hope the new treatment comes through very soon for you.

[meganoscar123 in reply to Ergendl]

Hi Ergendl, Thank you for your kind words, I am counting the days to D day!! x

[Hidden]

Thats fantastic to be able to see a light at the end of the tunnel - hope that you can be prescribed the drug very quickly. Lots of love xxx

[meganoscar123 in reply to Hidden]

Hi Tadaw, I am keeping everything crossed it is before Autumn when my health always dips but it is great to know at some point there will be a new drug to try. You all keep my spirits up, sometimes it feels like one step forward, one back but I will get there! Hope you are well and have a good weekend x

[Dedalus]

Everything crossed that the new treatment will be available soon & will be beneficial x

[meganoscar123 in reply to Dedalus]

Hi Dedalus thank you so much, everyone on this site keeps my spirits up xx

[Sherry44]

That's very good news Megan. Only hope it won't be too long before this new drug becomes available. Thank you very much for your reply to my last post.

In the meantime keep as well as possible.

Love

Ann

[meganoscar123 in reply to Sherry44]

Hi Ann, Thank you for your kindness, I really enjoy keeping up with your posts and I hope you can get out and about this weekend to do something nice for you xx

[Sparkimoore]

Hi Megan! Roll on Mepolizamub cos I'm desperately hanging on for it too. Pred has become ineffective, & Mycofenalate MOFETIL which has been so great Asthma wise is becoming intolerable with sev toxic side effects. I'm really hoping this new drug comes online soon. I'm from Jersey, & it's being supplied by Sou Hospital I attend every few months, when well enough. I really hope it works cos there's nothing else.. Hope it works for you too. I was told late Summer, early Autumn at the earliest.. In the meantime, hold on tight!!.

[meganoscar123 in reply to Sparkimoore]

Hi Sparkimoore, Oh sooo good to hear from you as I know there are not many of us out there with severe eosinophilic asthma, can I check are you given Mycofenalate MOFETIL to try to suppress the white blood cells from your bone marrow that cause the inflammation in your lungs?? I have not been given this drug but I have blood pressure/heart issues so maybe why.

I admit I felt a bit disheartened when the consultant said I now cannot come off Pred (although I still had bad asthma attack while on 30mg!) I must rty to get down to 10mg and stay on this as a maintenance dose. How do you cope on a daily basis? Are you tight and wheezy most days as I am despite Symbicort 400 x 8 and Montelukast??

I am worried as I already have airway remodelling from the scarring/mucus from inflammation and worry about long term damage in lung all this inflammation could cause like cancer...

I really hope you get this injection by Autumn it would be great to know this could potentially change our lives. Will you need to go monthly, they said at The Brompton it will be monthly for 3-6 months to see benefits but as I say no ETA yet....but it is hope! x

[Sparkimoore]

Hi Megan!

Are you able to leave me a private message so we could chat back n forth. I could tell you loads.. My experience, anyway. I'm only 53 & the Asthma started very suddenly in 2008..just with barking cough.. I'm a shadow of my former self now, tho twice the size thanks to the Pred! Gotta laugh or Id never stop crying..

Anyhow, message me so we can email each other if you'd like.

It would be so good to be in contact with someone going thru similar times. So hard..

Hope to hear from you soon!!

Rose

[Polzovatel]

Hi, I've also got eosinophilic asthma,what are your eosinophils level- mine 2.1x 10 9 or 28% and I was told recently that at this level it could be pulmonary eosinophilia . Did you have a lung biopsy? Does prednisone help? What are your breathlessness patterns- I cannot take deep breaths , so it's mainly inhaling, not exhaling 

[Merrytrious]

Did any of you manage to get Nucala? I have my fingers crossed for you x