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Biologicals vs wheeze

EmmaF91 profile image
EmmaF91Community Ambassador
5 Replies

Bit of a strange question (and very niche I know!)

Bit of history first; I used to be a ‘traditional/textbook asthmatic’ with a wheeze, reliable PF the works (only problem was I didn’t notice symptoms and we couldn’t get control). Was diagnosed severe, difficult eosinophilic and atopic and put forward for biologicals.

Tried xolair slight improvement but presented the same.

Tried mepolizumab and my wheeze completely disappeared! I would go from ‘normal’ to silent chest in an attack with only SoB and tightness as a sign (I’m not a typical cougher). Here my eosinophil count was 0.01 and I had to get used to the ‘no I don’t wheeze’ argument in attacks. After 3 months of mepo it was stopped and now my counts back up to 0.41 (as of last week) and during this attack I’ve actually had a wheeze in my lung fields again!

So the question is;

Has anyone one else experienced something similar with biological treatment? Have you had a ‘change of presentation’ and either lost your wheeze or lost another pointer of attack (cough etc). I’d be interested to know - when I mentioned it to my old asthma team I just got raised eyebrows and disbelieving looks. Will see what my new team says not that it’s ‘returned’ 😅

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5 Replies
Tree20862 profile image
Tree20862

I just got my 33rd injection of Xolair. I had a couple of rough years, being on steroids and then I started Xolair. The first year was rough and I was on steroids for 6 months straight! Then we (pulmonologist and I) successfully weaned me off steroids. I was off for 6 months the first time then did a 12 day course of prednisone for Fall allergies. I was off prednisone for 15 months and got a cold that triggered asthma and I needed prednisone again. Only a 12 day course :)

During the 6 months on steroids, I changed my preventer. Then a year ago, insurance changed their list of inhalers and I changed again. I found out that I had a lingering cough with a couple of them and one caused my peak flows to drop.

Stick with what helped. And see if a different preventer decreases your cough.

I was a wheezy kid but became a severe persistent asthmatic with cough variant in the last 5-6 years. I don't wheeze unless I'm really sick. I cough easily. I also get short of breath. The sob is the only consistent symptom I have had throughout life. I'm 52 years old and I have had reactive Airway Disease since I was 6 months old and I was diagnosed with asthma in middle school.

EmmaF91 profile image
EmmaF91Community Ambassador in reply to Tree20862

Hi

I had to stop xolair due to hypersensitive angiodema and mepolizumab due to really severe migraines and body pains (low back radiating to both legs, shoulders, neck etc).

I was just interested to see if anyone’s presentation changed from a biological (like I went from wheezy to non-wheezy and now I’m off again I’m wheezing again 😅)

Shellc profile image
Shellc in reply to EmmaF91

Could your wheezing be because it’s tree pollen season . I’m a wheezer but only when an allergy is triggered so I don’t necessary have an attack but I wheeze , I can’t here it myself but others put it out . Also at the moment tree pollens are out I’m not wheezing but my face is very red and itchy and Blotchy and my breathing quite bad . I started resilamab on Monday and my breathing seems worse but I will stick with it as it’s early days

EmmaF91 profile image
EmmaF91Community Ambassador in reply to Shellc

I don’t think so. I had years where regardless of the cause of attack my lungs always wheezed, year round, regardless. Be it due to allergy, exercise, illness, weather etc I ALWAYS wheezed.

As soon as I started mepolizumab my wheeze completely stopped, almost instantly, and attacks just went straight to silent chest and back no wheeze involved at all (despite 1 attack from illness, 1 from allergies and 1 from exercise).

Since stopping mepo I thought my wheeze had just completely stopped. Last Sat I had no wheeze despite my spiro etc being low (AN was most disappointed 😂). 1 week later in hosp with a severe attack (technically classed as life threatening initially) and all the docs were suddenly talking about a wheeze in my lung field (which ‘worsened as they treated me so probs had a silent chest at some point). My eosinophil count has increased from last week, so I was wondering if anyone else had found anything similar regarding eosinophil count and how their asthma presents 😅.

I always equated my ‘loss’ of wheeze with the mepo, but no one really believed me. Now I feel like it proves the point cause now without mepo I’m suddenly wheezing again 🙈

As I said it’s a very niche question 😅

Shellc profile image
Shellc in reply to EmmaF91

I think you are right, even though mep caused me a lot pain it did help me as since coming off I’m much worse, it took about 3 months for my esophil count to go back up , they 9.1 at the moment x

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