Mepolzumab

[Jimsq]

Hello, I am going to get my first dose of mepolizmab(Nucala) on Monday at mt local hospital. Anyone else on here getting it and what difference has it made to your life?

[TuckBox2]

I've been on Mepolizumab since May 2017.

I was 1st on Omalizumab in 2013, it worked well for the 1st couple of years, it did reduce my A&E visits and stays in hospital from 8-9 a year to 4 or 5, but after a bout of pneumonia it seemed to stop working so well. I was able to stop taking 4x daily nebs and stopped uniphyllin.

Since being on mepo, not only have I not had any A&E visits or stays in hospital but, I have not missed a day off work with asthma problems. I started self administering since November 2019 which saves not having to take time off work to attend hospital and that helped not needing to go to hospital during this covid problems.

[Jimsq in reply to TuckBox2]

Thank you for the reply. I have never been bad enough to require a hospital visit.

[EmmaF91 Community Ambassador]

I was on it (for 3 months). I went from monthly hosp admissions and daily issues at home to nothing until I got a chest infection. The issue for me was the side effect burden was too high to remain on it so they switched me to benralizumab which I get less side effects from.

Hope it give you back control without bad side effects!

[Jimsq in reply to EmmaF91]

Thank you, What side effects did you have?

[EmmaF91 Community Ambassador in reply to Jimsq]

From memory (this was almost 2 years ago)

Migraines and headaches (migraine lasted about a week at a time, calmed down, then was constant background headaches which fluctuated).

General aches and pains (I’m an ex gymnast with an injury list a mile long. Basically all past injuries hurt)

Nausea in the morning (they told me unlikely to me mepo, but mepo stopped and so did nausea)

Fatigue (work, home to eat/sleep, work, home to eat/sleep. No real energy to do anything else)

Erm. Think that’s all. Or that was the main things. I have mild chronic fatigue so it felt like a massive flare, whereas on benra I get the same (minus nausea, but do get reflux bouts) but to a much lesser degree.

That being said I know people on mepo how have 0 side effects and perfect control. So 🤞🏻🤞🏻 you fall into that group!!

[HannahBenson]

Hi Jimsq

Ive been on Nucala for over a year now....and it worked from the very first injection. I was able to get off Prednisone which caused more harm than good as I had to stay on high dosage of Pred.to just breathe...Now I am completely off Prednisone and down to symbicort 1 puff 2Xdaily. I have a lower back ache which has been listed as a side effect but I have arthritis so that could be affecting my back...anyway, it is better than gasping for air as I was before the Nucala. To me it is a miracle and it has given me my life back.! Hannah

[Jimsq in reply to HannahBenson]

Hi, I hope I have the same result as you. I have been on 10 mg pred since last Nov and had no problems but GP was worried about long term effects of steroids. Down to 5mg every other day so hopefully will be off them altogether once the injection takes effect.

[Scottiedog11 in reply to Jimsq]

Had my first nucala jab at the Royal Brompton on Thursday. All went well and already feeling much better. Early days but so far so good.. good luck with yours.

[Jimsq in reply to Scottiedog11]

Hi hope all goes well with your injection. I went for my 2cnd one this morning, had to stay for 1 hour afterwards. I did not feel any different after the one last month, No better/no worse. Could because I am still on 5mg pred every other day. I am seeing consultant next week and hope to convince him to let me taper it off. I have to go back next month for another injection with a half hour stay. Hopefully they will let me try it at home after that.

Stay safe

[Scottiedog11 in reply to Jimsq]

It went well enough thank you, I’m not on prednisone at the moment so can’t compare, however my flare ups at night have lessened whether that’s down to the injection or just a coincidence who knows? I’d like to think it’s the injection - positive thinking on all that. My asthma nurse said two things to me- 1. It could take several months for it to work properly so don’t come off your meds straight away. And 2. You should take your peak flow regularly so that you can monitor how good your asthma really is. Often it’s the only way I can tell whether I should put myself on steroids. Good luck!