Eosinophils

[Shellc]

My eosinophil are back up to 0.9 since stopping Mepolizumab, stopped due to side affects . I wasn’t sure it was helping but the way I feel now is much worse. Just wonder if it’s just a winter thing.

[EmmaF91 Community Ambassador]

Oh no! Sorry to hear this!!! Are you trying something else (reslizumab/benralizumab) to try and reduce it again?

Mines just been stopped due to the side effects but I think I have to wait til my levels are high enough before they’ll give me anything else! I’m currently at 0.1 but haven’t yet ‘missed’ a dose. The lowest I’ve been was 0.01 on it tho so hopefully I’m heading in the right direction 🤞🏻. Don’t know if it’s related to winter or not tho! I had a similar thing with xolair - on it didn’t feel much benefit. Off it my asthma was really bad and a lot more allergic to things! Maybe it’s an over reaction from withdrawal 🤔🤷‍♀️

Hope you start to feel better soon! X

[Matman in reply to EmmaF91]

Just Posted two questions about Omalizumab (which you reference in your Comment). May I ask how long you’ve been off it, and how long the increased allergic response and worse asthma symptoms persisted for? Are you still more allergic and more asthmatic than when you were on Omalizumab?

[Shellc in reply to Matman]

I was on omalizamab in 2017 , I had about 6 injections but my side affects. On that were fatigue and spells where my breath just went fir no reason , very frightening , symptoms came back about 2 months after stopping, symptoms seem to be worse after stopping the injections , but not sure if it’s just because breathing was so good on them that you feel so much worse after if u know what I mean . But I do feel allergy’s have heightened especially with perfumes etc.

[Matman in reply to Shellc]

Thanks Shellc. Appreciated.

[Shellc]

I was stopped in October and tested in November and too low then , had the same with xolsir last year , been into Brompton today and sent them the blood results so hopefully that will push it along

[EmmaF91 Community Ambassador in reply to Shellc]

I had my last jab in Dec so maybe a couple of months to wait then til they’ll consider me 🙄. Good luck with the reslizumab- heard a lot of positive things, including from people who had the same issues on mepo!

[Shellc in reply to EmmaF91]

I was sceptical of having anymore as still got arms pains particularly right shoulder , having mri today to see what the problem is, could just be a coincidence as all the other issues have resided

[Shellc]

Hopefully try resilamab next

[Riff1954]

Hi can I ask what side effects you all had that resulted in the decision to stop the Mepo?

[omahjoa]

Hi can I ask what were your side effects on mepo. I am having chronic headaches and body pain ?

[Shellc in reply to omahjoa]

Yes mine was body pain

[EmmaF91 Community Ambassador in reply to omahjoa]

Tension headaches leading to migraine 2-3x month lasting about 3-6 days each. Body pains (particularly low back, legs and neck). Constant fatigue

[omahjoa in reply to EmmaF91]

I am the same except the headaches are constant. I also have tinnitus and pain everywhere and always exhausted. No issues with breathing so wondering should I stick at it. In my third month

[EmmaF91 Community Ambassador in reply to omahjoa]

Hi

Mine got stopped after the 3rd month (Dec). It was brilliant for my asthma, but really had an impact on working and life in general. I suggest you let the AN team know and see if you’re eligible for anything else - I’m currently in limbo but hoping that the next drug works both for my lungs and my body!

[Shellc in reply to omahjoa]

I stuck at it for 7 months but didn’t get any better so was taken off it

[Shellc]

Fatigue like I’ve never felt in my life a few days after injection , pains in legs and arms that kept me awake at night