mepolizumab

[cconsta1]

Has anyone been put on mepolizumab? I understand it's quite new? I'm meant to be (hopefully) starting in 2 weeks. Just interested to hear anyone experiences?

x

[Jenzzie18]

I am on omalizumab or xolair as it's also known. I think they are along the same lines that work on your immune system to stop flare ups. Mine works on the allergies I suffer from. It seems to be helping. It is not the complete answer as it doesn't solve all aspects for me only the allergy side, not the reactions to viruses, stress and tiredness. It has cut my visits to a&e in the last 16 weeks that I have been on it which is a good thing. Hope this helps. X

[cconsta1 in reply to Jenzzie18]

Hey,

Thank you. Do you get any side effects? My consultant said I won't be able to drive myself home after the injection for the first couple of jabs until I know how I react (which is such a pain, everyone works at the times I will have the jabs) and that for the first few months I will probably be tired and perhaps even feel quite weak.

I just read your post btw I feel your frustration. I was a teacher and have 2 children. My asthma suddenly stopped being controlled at all about 3 years ago when I was 28 and it was such a life shock. I lost my jobs and I've lost a lot of independence. I'm hoping at the least these jabs will mean I don't need to take steroids anymore I've been on them for 3 years at 25mg maintenance but I have to go upto 40mg at least once every 5 weeks. I have been put forward for xolair before but i was considered to unstable to start it. Which was insane because the reason they wanted to put me on them was that even on a high dose of steroids I was unstable my consultant was fighting it for about 5 months which was nice but it meant 5 more months of being stuck in no mans land. it had taken so long for my local resp team to actually admit they could no longer treat me themselves and refer me to a place that could that I've felt hopeless for so long that just added to it. when he said on Monday I think we should give up on that as your bloods and lung functions better fit mepolizumab (apologies if it's spelt wrong) it was such a relief. But I get really anxious starting drugs now (I think because The steroids have messed my body so much I worry about putting more chemicals. Also ironically the steroids give me anxiety)

I really hope it gets better for you. It's hard trying to keep it all together for everyone else. I am more open about it than I was but I am lucky that when I was referred from my local hospital to a specialist team part of the treatment process is seeing a psychiatrist. She really helped me see that being ill does not make me a failure and kind of helped me see how I can help myself by being more open to people. So far I really only open up to my husband and closest friend. But just doing that has taken some pressure off. It maybe worth asking next time you see someone if there is anyone who can talk to you about it like that? It's a huge life change. And not everyone gets asthma so it can make you feel like you're on your own. Also it's scary. Especially when you have young children you don't want to put them through anything that might upset them. I was so sceptical about seeing her but it really really helped me come to terms with what's going on.

I hope none of this sounds patronising. And I also hope it's not coming across like me me me. It's just your message just made me feel so bad for you because it reminded me of myself a little so I hope that sharing what's happened to me might help you? I don't know, but thank you for replying to my message anyway

X

[Jenzzie18 in reply to cconsta1]

Thank you. Yeah it's really hard to know where to turn to. I think I do need to talk to someone but that step in asking for help especially face to face with my consultant. It feels like such a big step and almost a bit of failure to ask for help. I really hope these injections work for you and bring things up. It's been a rough year and I am hoping that things improve but just struggling emotionally with it. X

[cconsta1 in reply to Jenzzie18]

I get that. I was lucky it was just done for me. But it is completely normal to ask so many people actually just need someone to talk to about it. You won't be the first person or the last. And my psychiatrist said to me asking for help doesn't make you failure at all. It means you've recognised something you need and you've done the right thing by going about getting it. If your chest is bad you have to go ask for something to help that so why not your when your mind needs it? Put like that it seems simple and I know it's really not, I still get stressed about it if I think I need to ask her about something. In fact I get stressed thinking about how to tell my consultant how much I've struggled with my chest that month. -and I still have whole days where I just cry, I miss my job and I've failed everyone especially myself.

But You're not a failure. This isn't your fault and you can only do what you can do about it. Other people have to help you unless you're trained in every single type of mental and physical medicine. If someone else was in your position and asked for help would you think they were a failure? I think actually you would probably think that person was abit of a hero for working so hard to get through it all and then being brave enough to get the help they need when they saw they were struggling with how to feel about it.

Thank you for the feedback on the side effects, 24 hours isn't as bad as he made it sound. Hopefully I will be the same xx

[Jenzzie18 in reply to cconsta1]

Thank you so much. Looking at it from the outside in if I was watching someone else going through the same thing no I wouldn't think they were weak or a failure. I think I may get an appointment with my GP and ask there first off as although I have a hospital appointment in a couple of weeks for my next injection I don't see my consultant until August. I just need to pluck up the courage to ask. Thank you for your support and please let me know how your injections go. Xx

[cconsta1 in reply to Jenzzie18]

That's a good idea, it's easier to chase up a GP as well. (If your consultant is anything like mine, I swear his secretary thinks she's actually guarding him)

Good luck. Thank you I will let me know how you get on (as much as you want to) always happy to talk

x

[Jenzzie18 in reply to cconsta1]

Thank you. Seems we have a similar thing going on. Do you still see a psychologist? And if you don't mind me asking how long did you see them for etc? X

[cconsta1 in reply to Jenzzie18]

I don't mind you asking at all. I started seeing her last August and see her once a month, (though I didn't actually see her last month as my son had Scarlett fever when I had my appointment.) it's about an hour an apt but it really flies. And I find she gets me talking about things without me really realising she's done it.

Yeah it does seem like we do have similar things going on. X

[Jenzzie18 in reply to cconsta1]

Thank you. I think I will go and see my GP and see what I can get sorted. X

[Jenzzie18 in reply to cconsta1]

Sorry side effects. I do get a few. I am really tired for a good 24hrs after and generally feel a little weird. I also get really itchy. Other than that nothing major but I do have to carry two epipens with me at all times as a precaution. Xx

[predgirl]

Hi I have started mepolizumab. I have only had one dose no side effects. I have to stay in hospital for around 3 hours after the injection but no one said anything about driving. However my hospital in cental London so went up by train.

[cconsta1]

That's good to know thank you.

Was supposed to hear last week about when I can start and still not heard. So frustrating x

[cconsta1]

I have found out I start mepolizumab on July 13th 🎉 I'm excited that it might give me some life back nervous that it won't work.

[Jenzzie18 in reply to cconsta1]

Hope it goes well. Stay positive I'm sure it will help at least even if it doesn't solve everything. That's what I found with my xolair ones. X

[Mintoes]

I've had 2 injections and absolutely no side effects. I had to wait around for two hours for each of these but next month, only 30 minutes. My consultant has kept me on a low (5mg) dose of pred whilst waiting for mepo to work and, it may be the steroids?? But so far feel fantastic!