allergic to benralizumab today started on mepolizumab feeling rough

[mylungshateme]

hey so after 2 stat doses of first biologics I had to go back to mdt to be discussed as was reacting within minutes each time and requiring close monitoring for 4hrs both times. So today started mepo within 5 mins same but not quite so severe I feel rubbish. They've now added benralizumab to my list of allergies with magnesium, and ventolin. How do others manage with biologics or with severe eosinophilic asthma and severe uncontrolled allergic asthma? Also I've weaned my pred down to 12.5mg lungs twitchy,but determined to reduce another 2.5mg however respiratory nurse really doesn't want me to reduce as my body is so used to pred and asthma not controlled..why don't they get thats why we hate it and want to come off asap but safely? ? Also as I pointed out my asthma is never controlled hence why the biologics!! So I will be reducing as I did last year safely and slowly an watching for symptoms as the side affects are out weighing benefitsbenefits. 😬

[floating_]

Could Xolair be an option? I'm so sorry you're stuck in this position!

[mylungshateme in reply to floating_]

I'm also eligible for this one too but much higher risk of anaphylaxis so respiratory nurse thinks this is why cons trying these first. Also there is a new biologics available that my team will be ready for Sept/oct for allergic asthma so that's another option. Maybe now they'll listen when I say I'm hypersensitive an react to loads of things including meds! 🤪🤣😂 x

[floating_ in reply to mylungshateme]

Ohhh!!! Do you know the name of it??

Personally I'm quite prone to anaphylaxis and have been fine on Xolair, so it might be worth a shot? Not sure. I hope they figure something out for you soon.

[mylungshateme in reply to floating_]

Ah thanks me too. No they were very careful not to go into details! Lol but I will find out next time.

[Celie1]

Hi 👋 So sorry this hasn’t worked for you. You must be so tired and fed up with it all. Hope they can find a biologic that works 🤞x

[mylungshateme in reply to Celie1]

Hey you! No not fed up just bit frustrated but still feel hopeful that I'm on the right path. Going to start my calms app again and really try to make time for self care so it doesn't drag me down again. Blimey this respiratory journey is something else isn't it?! 😂🤣🤪🌻 x

[Celie1]

Yeah it’s rubbish at times. Glad it hasn’t got you down. X

[mylungshateme]

Hmmm so after having mepolizumab fri I've felt rubbish but slightly different to when I was reacting to benralizumab. Me being me still hopeful and just getting on with it (although been a struggle) tonight is not good awake most of it coughing pf has dropped by 90 🥴😫 tight chest, everything a struggle work is challenging as I'm exhausted and so puffed out. Yes I've done covid tests and negative 🙏🏾🙂 but my lil one has a LRTI so could it be this or more likely me reacting to mepolizumab? I tick boxes for "reacting contact respiratory" just reluctant as desperately trying to come of prednisolone an already argued with them I would reduce this wk, they said no I'm not stable (ok they were right) but I don't want it increased. 🤣😂👀 oh I know I need to ring respiratory I've just been putting it off as I know what they'll say increase devil pills and another biologic I can't have. 🙄😬 thanks for reading if you made it to the end of my ramble! X

[Patk1 in reply to mylungshateme]

Time will tell if uv caught something frm child.how bad has yr reaction been? Have u had anti histamine? Ive severe uncontrolled Eosinophilic asthma+ started biologics

[mylungshateme in reply to Patk1]

Yea on 20mg loratadine and 12mg piriton daily.

[Bettina_24]

I have just come across your post mylungshateme I have also had a reaction to Benralizumab (am dealing with it currently), this is following a previous reaction to Mepolizumab ( Autumn 2021) and ... yes a bad reaction to Xolair previously which left me with hearing loss.The Benralizumab was stopped after the first dose but the side effects have continued so far although of course other things could be aggravating my lungs (and ears and rhinitis!) I have been told that my medical team are "having a think" about options.

Like you I am intolerant or allergic to lots of meds.

I hope you have some success with your respiratory team and feel better soon.

[mylungshateme in reply to Bettina_24]

Oh no you poor thing. I said to my partner last night I never anticipated reacting to biologics I had prepared for them not working but not this. I'm surprised they put you on benralizumab after reacting to mepolizumab as that's the slightly weaker version or so that's how respiratory have explained it to me. So if you react to mepolizumab than very high chance of reacting to benralizumab as fully depletes. I know xolair higher chance of anaphylaxis so think they're reluctant...

So what does this mean for you re treatment is there any biologics your eligible for or on the market for trials? This is what's slightly hitting home I saw biologics as my miracle to getting my life back now it's looking well not that straight forward! X

[coral12 in reply to mylungshateme]

Same here I'm on 6th nucala/mepolizumab.but seems to be weakening I'm immune system loads .on my 3lot of steroids at present an antibiotics since starting . Lost faith abit

[mylungshateme in reply to coral12]

Such a pain my cortisol test showed I'm now partial adrenal deficient got my Synacthen test next week also diabetic now due to steroids. My chest isn't great atm but I absolutely refuse to increase steroids unless I'm literally dying as caused so many issues. It's like I'm allergic to devil pills now. I don't know and they don't know about biologics or anything else. I just can't believe how many years it takes to get answers and a treatment plan that works. It's exhausting lol. Good luck lovely. X

[Bettina_24]

Hi, thanks for your reply. Unfortunately it seems some people are intolerant or allergic to a great many things. I was told the Benralizumab is "in the same family" as Mepolizumab but behaves in a slightly different way so they would try it, also there was some debate last year as to whether I had a reaction (to the Mepolizumab) or had the flu'. I suppose my reaction to Benralizumab confirms the original diagnosis and response. I had Xolair several years ago when it was pretty new and as I said, lost some part of my hearing (I now have a hearing aid)

I don't think I will try another biologic, three attempts (and the side effects) is quite enough.

However its not all gloom, my granddaughter has severe allergic dermatitis and she is being treated with Xolair with great effect, so it clearly can be positive.

I feel in a difficult position atm as I don't know of other treatments outside the usual inhalers etc. No - it's not straightforward! X