Mepolizumab

[Gemfli]

Hey people,

Ok, so i have suffered severe asthma all of my life, in the last 5 years it has got significantly worse requiring 1-2 courses of prednisolone a month ranging from 40mg a day for a week to a reducing dose along with many doses of antibiotics over the course of the last 5 years.

My consultant has put me forward for the mepolizuman injections beginning on the 3rd April, im very pleased to be given the chance to try it and am feeling optimistic, but have heard it isnt for everyone as with anything. i have in the past tried zolair, methotrezate, cyclosporin and all varieties of inhalers, but nothing seems to work for me.

I wish to be able to start going back to the gym and swimming and enjoying life, i currently do not go out unless i have to for fear of having an attack or getting tight chested, very few people seem to understand how my condition effects me and think i am just making excuses, which is hard to deal with.

Anyway, anything you can tell me about the mepolizumab, side effects experienced would be fab. I was also wondering after the 6 month trial of having the injections monthy at the hospital would there be an option for me to self inject rather than having to keep going to have it done?

Sorry or the rant x

[Shellc]

I was on it for 6 months but come off it due to side affects of pains in legs keeping me awake at night a severe shoulder pain , there was talk of maybe starting some people on home injection , it’s not for everybody but don’t be put off , I’ve just started resilamab which is similar but intravenous, so far so good but early days

[Gemfli in reply to Shellc]

Not heard of the drug you are currently on, but if it works for you thats great. My consultant has said to me i have exhausted most options now, hich left me feeling a little disheartened as well as scared.

[Wheezer2018]

Hi,

I’m on this now - had two injections so far.

Not really having very many side effects.

I get tired with mild headache about 72 hours after the injection for about 48 hours but that’s about it.

I’m told it takes three injections to get any effects from it however I’m already noticing that my peak flows are getting better, I’m not needing salbutamol either.

I’m still on steroids and my preventer inhalers but I’m hoping to wean my steroids starting after the third injection.

[Gemfli in reply to Wheezer2018]

That's good, sounds like it is so far so good :), i hope it helps for you and beings some relief. I would be interested to know how you are after the 3rd injection.

[Josephone]

Iv been on mepo for two years and up to now there’s been a significant improvement in my asthma condition and my quality of life is now really good. No more severe chest infection necessitating lots of steroids and antibiotics

[EmmaF91 Community Ambassador]

I was on it for 3 months. Absolutely brilliant for my asthma and really reduced daily symptoms and attack severity. Unfortunately I got 2-3 migraines a month lasting 5-7 days a time, and severe back, neck, shoulder and leg pains, which was a big issue hence why they stopped it.

I’m waiting to start benralizumab and I’m hoping I get all the benefits and none of the side effects I got on mepo.

That said I know lots of people on it where they are symptom free with no side effects so defo worth a try!

I also heard rumours that they were going to try home injections (self or community nurse given) for those who get past the trial stage and go on it long term.

[Gemfli in reply to EmmaF91]

Im willing to give anything a go now, but glad you have managed to find something that doesnt effect you side effect wise.

[WheezleSneezle]

I started on it recently. I am due for my 4th injection tomorrow. It is amazing for my asthma. Before it, I was on salbutamol nebs every 2-4 hours, atrovent nebs every 6 hours, pulmicort nebs 3x a day, all on a permanent basis and oral steroids also on a long term to permanent basis (dose ranging from 5-10mg a day maintenance up to 75mg a day when ill). I was and am still on singulair as well.

After 3 shots of mepo, I have been able to almost eliminate the nebs and I am now off the oral steroids. I don't have any side effects from it that I can notice. I hope this continues as it is a wonder drug for me so far. Before mepo, I was on xolair for many years and that saved my life but it only treated the allergic component of my asthma and the effect seemed to wear off a lot after years.

Before I switched to mepo, I was hospitalised 5 times in under 6 months and not doing well at all. My FEV1 was down to 16-17% predicted and I wasn't expecting to live too much longer. 3 weeks ago my FEV1 tested at 31% which is a miraculous improvement. I never thought I would see that kind of number again.

[Gemfli in reply to WheezleSneezle]

wow that is incredible that its had that effect on you, you must feel like a new person. Must have been such a scary time for you. I was on xolair, but it made no difference to me at all, im hoping this is going to work

[Jsc3]

I am also about to start the basic course to see about starting mepolizuhab .looking forward to getting started .

[WheezleSneezle]

I really hope it works well for both of you. I do feel like a new person in terms of my asthma but of course I still have disabling long term irreversible damage from it. I also have other conditions and am dependent on a CPAP machine 24/7 but that’s a whole lot better than being dead from asthma too!

[Gemfli]

I am feeling very optimistic after reading everybodys storys, i had my first injection 4 days ago, had a bit of a headache and fatigue that day and terrible insomnia that night, but nothing since. Actually went to bed last night without having to use my nebulizer which never happens, i dont know if it is psychological as i have been told it takes on average 3 injections to notice a difference but who knows. I have just started a blog about my asthma, im blogging about my journey on mepo hoping it helps and also raises awareness of the condition. If anybody is interested v4.simplesite.com/#/pages/4...

[Gemfli]

wordpress.com/block-editor/...

this is the link not the previous one, sorry