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New to biologics - don't feel particularly well.

Ghoulette profile image
10 Replies

Evening all. Hope everyone is managing ok in this cold weather 🥶.

So in the last 2 weeks I've had to take rescue doses for my adrenal insufficiency, had 2 emergency hydrocortisone injections (each one administered by work colleagues a week apart) as not caught early enough and generally felt off. I'm experiencing nausea, fatigue, floaty headed, stomach cramps and upset tummy amongst other things most days, hence the rescue doses. Now, I have had 3 separate courses of abx and prednisolone, and 2 hospital admissions in September/October for chest infections. I then managed another chest infection at home in November (although in hindsight I should probably have gone to hospital as peak flow dropped drastically to 55% of normal but it was the weekend and figured they wouldn't do anything other than what I was doing at home with nebs, etc 🤔). I did go to the GP on the Monday who px yet another course of added abx and prednisolone. Chest has now cleared but I've not felt right since. Peak flow is still not up to optimum but is in the green zone. I've been steadily trying to wean down HC (which I carried on whilst on pred) and am down to 20,5,5 when normally 15,5,5 but obviously having to updose/rescue dose at times during the day. I'm trying to reduce daily nebs to twice daily.

Now, the only other thing is I had my first ever biologic injection for my severe asthma about 2 weeks ago. I'm on the new Tezelepumab. Could this be affecting my AI? Any fellow asthmatics with AI on biologics, do you find it makes your AI more temperamental? Or is it possibly just my body adjusting to the new med? I'm due my second on the 20th December and I will obviously discuss it with the nurses ☺️

I do also have type 2 diabetes and chronic kidney disease (stage 3) thanks to long term pred.

Any help/advice/experience appreciated xx

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Ghoulette
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10 Replies
peege profile image
peege

Hi, I wish I knew something about it but I'm afraid I cannot help in any way, just wish you the best. P

Ghoulette profile image
Ghoulette in reply topeege

Thank you x

Poobah profile image
Poobah

I would give one of the Asthma UK nurses a call on 0300 222 5800 as your case sounds quite complex and they're best placed to advise. The helpline is open Mon to Fri, 9am to 5pm. Wishing you all the best.

Ghoulette profile image
Ghoulette in reply toPoobah

Definitely complex 🙈. Thank you, I'll try them x

Gymbearo profile image
Gymbearo

This is way out of my league but sounds like you’re having a rough ride, so I hope things improve soon!

Ghoulette profile image
Ghoulette in reply toGymbearo

Thank you x

hilary39 profile image
hilary39

I'm so sorry, this sounds like the full carousel of all the illnesses taking turns rearing their heads! How exhausting and in this chilly weather and at the holidays no less.

I have severe asthma and SAI and take Xolair. I've never had any issues with my SAI + being on a biologic but that is just my anecdotal experience. I've been curious about Tezspire but know little about it.

It's possible your infections and cycling off pred and low dose of HC (I say low since a lot of the time people are at 20 mg and I think you said you typically take 15 mg) has wreaked some havoc on your cortisol levels.

Do you take electrolytes and salt regularly?

Ghoulette profile image
Ghoulette in reply tohilary39

Thank you. I'm thinking the biologic isn't affecting it as a few people have said that it didn't affect theirs. I'm on 15, 5 and 5 of HC normally but I've been on sick day rules and pred so as you say, I think it's likely this that is causing blips. Thank you so much for your reply x

I don't take electrolytes or salt supplement other than a lucozade sport drink at lunch.

TuckBox2 profile image
TuckBox2

Hi Ghoulette,

I have very similar complications, I have esonophillic asthma, 5/6 exacurbations & admissions a year3-10 days at a time, plus many chest infections on abx & pred. CKD stage 3, diverticulitis, heart attack (MI 2019), high blood pressure, psoriasis, GERD, primary aldosteronism. fundoplication (2009), adrenalectomy (2022)

I started biologicals (omalizumab) in 2013, it helped my a lot, I could stop taking 4x daily nebulizers , stop aminophiline, I had fewer infections and admissions. This was fine until I had a bout of pneumonia (2015) and things started to go downhill, Jan 2017 I had 14 days in hospital. In May 2017 I was swapped to Mepolizumab. This was a real game change, I reduced my medications and I had not missed a day off of work , not had any admissions nor any pred until October 2022. I had abx & pred from my GP 10 days before, things did not improve so I took myself to A&E and was kept in for 2 days, I then tested +ve for covid over Xmas. I had flareups again in January & February with abx & pred. Then I had a really bad exacurbation in May, was in hospital fo 9 days with parainfluenza virus and then pneumonia. The asthma clinic said they would swap me over to one of the newer biologicals. After a lot of tooing and throwing I was put on Benralizumab which I started this morning, so fingers crossed it will help me this time.

Ghoulette profile image
Ghoulette in reply toTuckBox2

Oh gosh, you too have been through the mill 😔. I tested positive for Covid at the beginning of September, but thankfully was negative for my first admission in September. I think my lungs have definitely been more twitchy since Covid.

I hope the new biologic works for you. I'm.really hopeful that the Tezspire will do wonders for me 🤞. I'm not eligible for the others as my steroids (pred and hc) wipe out my eosinophil count 😏.

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