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AI and MAB/biological question

EmmaF91 profile image
EmmaF91Community Ambassador
•6 Replies

Hi everyone

A really niche question to the community but hopefully someone will have an answer 😅

Long story short; long term steroids now finally at 5mg (4-5 years, averaging 20mg pred, ended up on kenalog steroid injections). Multiple symptoms of a likely AI problem (cortisol check booked and then synathen after that if it shows the issue I fully expect to be there).

Question for any AI sufferers on MABs/biologicals. Do you find you have to double dose on injection day (I am on benralizumab if that helps 😅). I usually get side effects the night/next day of my MAB (migraine, nausea, can get mild asthma and urticaria/angiodema, extreme fatigue (once literally fell asleep on my feet 😅), and body aches…)

I felt really crappy since MAB and ended up double dosing today which mostly calmed the issues (still some mild problems).

Just want to know if others have found similar really 😅. Many thanks.

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EmmaF91
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I don’t find that, no. I’m on omalizumab (only for last six months.) I’ve not yet had any side effects at all, not even fatigue. If it helps, I’d definitely double it. It’s only for one day after all. My endo says only to double it if really ill ie a high temp, or needing surgery which requires a gen anaesthetic, but I think that’s rubbish. I just use my gut feeling

EmmaF91 profile image
EmmaF91Community Ambassador in reply to

I usually get side effects the night/next day of my MAB (migraine, nausea, can get mild asthma and urticaria/angiodema, extreme fatigue (once literally fell asleep on my feet 😅), and body aches…)

Very jealous of no side effects (but I wouldn’t give it up for anything, other than a better MAB with no side effects at all 😅)

But thanks for your experience! I might see what happens next dose. Cause it’s 2monthly I’ll just wait it out and see if it’s a repeating pattern 😅

in reply to EmmaF91

Hmm those side effects don’t sound very nice at all! But as you say, still worth it. Are you able to work next day?

EmmaF91 profile image
EmmaF91Community Ambassador in reply to

This is when I fall asleep on my feet 😂😂😂. If I don’t sleep the entire day after an early morning stab, work is hard. Usually I aim to have it at the weekend. AlL tHe SlEeP 😉😂

Mintoes profile image
Mintoes

Hi, like you I’m now on 5mg pred and benra( x3 jabs now). Usually feel tired the day after the biological but don’t usually need to increase the pred, if anything, asthma symptoms better after benra than before.

Starstream20 profile image
Starstream20

Hi, I had my second jab of Benralizumabs two weeks ago but have had no side effects at all.Still on 10mg a day of prednisolone, so not feeling any worse and have not noticed feeling any better.

Would love to get off the steroids though as not sleeping, sweating, bruising etc.

Not really helpful to you, but thought I would comment

😀

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