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Eosophillic asthma treatment

Kalkan63 profile image
12 Replies

Thanks for accepting me on this group. Is anyone receiving anti -il-5 treatment for the above? Please would you share your experience of this. I also suffer chronic sinus issues and polyps. Hospital appointment tomorrow to discuss this treatment for myself. Inhalers etc not stopping regular flare ups and needing oral steroids and antibiotics approx every six weeks. Thanks.

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Kalkan63
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Josephone profile image
Josephone

I use to suffer a lot from sinus infections and polyps and required surgery a few times but what I found very helpful is the NeilMed sinus rinse starter kit. Hope that’s helpful

Kalkan63 profile image
Kalkan63 in reply to Josephone

Thank you. I've used nasal rinses for about ten years now and prescription steroid nasules etc. Just did it five minutes ago actually lol. My sinus issues feel better this last year but I do get flare ups which affect my asthma. My chest is the biggest problem now my high dose preventive inhalers don't seem to be working enough to stop my peak flow dropping and then getting very breathless it's barely two hundred at the moment and that's good . Thank goodness I don't get Asthma attacks as such that need hospital treatment it's not that kind of asthma apparently. Seeing the chest specialist today regarding trialing some sort of injections. I need to see the ENT too I've waited two years on the list. I think my sinus infections and flare ups are all part and parcel of my chest exacerbations both linked. Oh well we'll see what they say today bit nervous as I've suffered for so long I just need some decent treatment not constant oral steroids and antibiotics. Thanks for your advise much appreciated.

Josephone profile image
Josephone in reply to Kalkan63

I was with those symptoms for a few years but thankfully ever since I started mepolizumbab monthly injection 5 years ago my eosinophilic asthma and sinus issues are significantly better

Kalkan63 profile image
Kalkan63 in reply to Josephone

Saw a chest specialist this week and they are trying to rule out EGPA Churg Strauss first. My late brother had it and I am suffering exactly the same symptoms. They're still not sure if it runs in families. My eosophils are high and high urine protein etc. I need to see ENT waited two years the chest doctor wants biopsies on my polyps ( if I still have any) .If it's eosophillic Asthma they're going to try me on injections. If it's EPGA more of a challenge think it's a type of vasculitis rather than just a lung/sinus issue. Probably injections for that too. Do you have any side effects from the one you take and can you administer it yourself after a while? Do you still need oral steroids occasionally I'm on them every six weeks approx? Thanks.

CharlieLondon profile image
CharlieLondon in reply to Kalkan63

I was reading your previous comment & thought it could be EGPA - I have this, on benralizumab and relvar, doing brilliantly, off all prednisone now. If you have high eosinophils Benra is great. Good luck with getting this resolved. It's a really frustrating and horrible place to be.

coral12 profile image
coral12 in reply to Josephone

Hi .I'm on relvar ellipta hi dose inhaler .tiopropium hi dose inhaler ventolin .and now as of 6months ago nucala injection ever 4weeks . Suffer really bad with sinus /polyps issues .was all workin not to bad until I got COVID in Dec .now things r not so great .on steroids an antibiotics now for bad chest infection .think I need to ring my consultant up

Poobah profile image
Poobah

Nasal polyps and asthma can be an indication of AERD, also known as Samters Triad. Diagnosis is usually by ENT rather than respiratory. I really struggled with my asthma until I was diagnosed and my inhalers were changed to dry powder (the propellant in the aerosol type was the culprit for my asthma).

The most up to date research indicates that it's not salicylates that irritate the condition, but omega 6 rich foods. I was also told to avoid sulphites, preservatives and colourings in food and drink.

I conquered the polyps through diet, daily Beconase (keeping the med in the nasal cavity for as long as possible), Montelukast and Buteyko breathing exercises. It took years to get control and now I only use Beconase if I have a cold.

If polyps are returning after surgery then biologics may be the answer, especially if asthma is difficult to control.

samterssociety.org/

Grimlock88 profile image
Grimlock88 in reply to Poobah

Hi there P. I was also diagnosed with AERD (2021) and the symptoms were pretty severe. The polyps were almost hanging out of my nose, the allergies were completely out of control, & the asthma was totally debilitating. However, after doing a lot of my own research - I’ve managed to ditch the nasal steroids & rinses, I no longer suffer from allergies, & my SOS has returned. I currently only take a medium strength inhaler, but I’m also hoping to ditch that by the end of the year.

Poobah profile image
Poobah in reply to Grimlock88

That's very interesting. What did you do to achieve better control?

Wheesy profile image
Wheesy in reply to Poobah

I has taken me and my excellent medical team 7 Years to get on top of my severe lung conditions [4 in all] and I still have exaserbations but most do not require a trip to HOTEL A&E we have to keep trying things until we ahieve a better way of life.So dont despare.

Josephone profile image
Josephone

I only have steroid once a year when I get an exacerbation and it’s only 25 mg a day for a week. I inject myself with mepolizumbab monthly and don’t suffer from side effects. I live a perfectly normal life

Blueforest23 profile image
Blueforest23

Hi, hope you can get to the bottom of this and feel better soon. I have polyps and chronic rhinitis and am always looking for new ways to reduce symptoms.

I came across this which may become more available if it makes a name for itself - it’s basically a device that delivers meds (fluticasone) deep into the sinuses, as nasal sprays only reach so far apparantly. xhance.com/ I was thinking of trying it at some point. There may be a lot to be said for the effectiveness of nasal steroids depending on its method of delivery.

I don’t find that saline rinsing helps to be honest (feels a bit like adding water to mud feels like I’m congesting it even more if that makes sense) but there is evidence for it and it’s what I’ve been told to do

I don’t have a diagnosis of asthma (I am awaiting spirometry tests) yet but am worried about having something like eosinophilia rhinitis/asthma or Churg Strauss. My blood eosinophils were 0.6 (should be under 3) however allergy tests were negative. Had the rhinitis/polyps daily for 13 years now, so you mind if I ask how long did you have the rhinitis/ polyps before being diagnosed with asthma?

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