Has anyone been diagnosed with e-asthma? - Living with Asthma

Living with Asthma
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Has anyone been diagnosed with e-asthma?

HikesWithDogs
HikesWithDogs
22 Replies

My asthma has gotten worse in my 50s but I have two known triggers: cats and nuts. Cats have always been a trigger and nuts are a new trigger. My gastroenterologist wanted to test me for EoE but my allergist doesn’t think I have it. I have seen a lot of advertisements about e-asthma and am curious if anyone has been diagnosed with it? What symptoms did you have? How is your medication for it working?

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EmmaF91

Hi

I have both severe atopic asthma and severe eosinophilic asthma (diagnosed 2017 aged 25). I got to the point where I was in hospital every other week with an attack, had 9 life-threatening asthma attacks (following UK criteria) in 12 months, had constant daily symptoms and couldn’t always ID the trigger for an attack. I’d trigger from the normal exercise, dust allergy or animal dander, but I’d also be very severe issues as soon as I got ill (even if it was D+V and not chest related, or a very mild cold). I had issues in storms, or temp changes and my lungs hate the cold!

I’ve always had sinus issues and I’ve learnt that as soon as I have a sinus infection, it’s time to up the pred and get PRN antibiotics as my body loves to bounce infections from the sinuses to my chest (sometimes via UTIs too 😒)

Until July I was on xolair which helped a bit (reduced severity of attacks but not really the frequency) - stopped due to hypersensitive reaction. I’m now on mepolizumab injections which have really helped my symptoms (since starting end of September no asthma issues and only occasional daily symptoms - in the 2 month interim between xolair and mepo 8 hosp trips and 3 admissions totalling 10 nights in so massive improvement!), however stuggling with the ‘aches and pains’ side effects... if they don’t calm down by dose 3 I’ll ask to switch to reslizumab.

It’s definitely worth being tested IMO, esp as it’s just a BT. If it’s high then you can try the biologicals, if it’s not then you’ve ruled something out!

Hope that helps. Good luck x

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HikesWithDogs

Wow, I have never met anyone with asthma so severe. I am so glad you found help and got it under control. How very scary. I really appreciate you sharing your story. What hypersensitive side effects did you experience on Xolair?

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EmmaF91

Nah, I’m not that bad... I know people a lot worse off than me! I know I can get symptom free on the right drug combination and right time of year plus I have so far avoided intubation (a couple of close calls tho). I was more frustrated cause it put my life on hold - my 4 year masters degree turned into 7 years but I was to stubborn to pull out of it... I graduated this year, which I feel is due to the xolair 🎉! I’m happy now my life has started again so I can go to work and actually use what I’ve learnt! 😂

I started getting hives and angioedema on the xolair. It had a very bizarre timeframe tho so initially we blamed it on other things. I’d have the injections, 2 weeks later (to the day) swollen lips, 3 days after hives all over my body. It’s only when it happened 3 times in a row to increasing symptoms and the exact same pattern that we stopped it, and it hasn’t happen like that since. I do seem to be more prone to hives and angioedema now than I was before the xolair tho so waiting for an appt with the allergy clinic (good old NHS... it might take a while but at least it’s free- very important for a cash-strapped new graduate 😉).

Hope that helps x

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HikesWithDogs

Thank you for sharing the side effects you experienced while on Xolair. They sound pretty serious. So I am glad you found a better Rx. Congratulations on your Master’s degree!!

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Asthmasucks777

I have been diagnosed as having it. Most of the time, it feels like a elephant on my chest.

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HikesWithDogs

I can’t imagine what that is like. I saw the pulmonologist and I am fortunate I do not have e-asthma. Are you taking anything that helps?

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Asthmasucks777

I'm getting a shot Faserna, and in on 3 Inhailers. It is alot of.hitnand miss. I have good days, and bad.

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HikesWithDogs

I hope you get some relief soon! Did you get diagnosed from a blood test for eosinophils or from a FeNO test? I found the FeNO test incredibly difficult to perform. I must have tried it 15 times before I finally got it. I think the nurse was going to give up on me if I didn't get it on the last try.

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Carakraft
CarakraftAdministrator
in reply to HikesWithDogs

I have done the FeNO test lots of times now- it’s a useful test for my doctor and me 🙂

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HikesWithDogs

My doctor told me any score under 25 is normal or negative for inflamation in the lungs. Is there more to it than that? Do scores under 25 have meaning or do all scores from 0 - 24 mean the same thing?

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Asthmasucks777

They did a blood test, and it was positive for it. I appreciate the kind words very much! I wish you well on this crazy journey!!

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HikesWithDogs

How did the Faserna work for you? I have a choice between Xolair, Nucala, Faserna and DUPIXENT and I have no idea which one will work best. Thanks!

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d2read

This is going to be pretty long -- apologies, but I think it might help. I have had severe asthma pretty much since birth, and I'm 63. Severe enough they didn't expect me to survive infancy, then childhood ... still here. Long story shorter ... moved to DC, unknown toxic mold exposure in the wall cavities of my apartment -- asthma went completely off the rails (eventually was on 60 mgs of prednisone for 18 months!). By the time we figured it out and I'd moved, it was too late -- a lot of damage had been done that was irreversible. Fast forward to 2012 and a lot of problems later, I was running very high levels of eosinophils for no known reason. (Every time you get a complete blood count blood test, they run eos -- so the doctor ordering gets the report and can tell you, but may just not recognize what the problem is.) A lot of this is very new science in many ways. I now have been diagnosed not only with atypical Hyper Eosinophilic Syndrome, but with e-asthma, and now with e-emphysema although I had zero risk factors for it.

I've been on Xolair since Sept 2012 -- and it's been amazing. It has dramatically reduced my allergic reactions, and while I don't take chances with things, I can have dinner at a friends' home with cats, without heavily dosing with Benedryl before and after, and I haven't had an allergy-triggered asthma attack in several years.

Sometime between around 2014, we started noticing my asthma was changing. I was having trouble waking up at night, not wheezing, but with a sensation of pressure. After a lifetime of wheezing marking my attacks, suddenly no wheezing. Still the tightness, but not wheezing. My rescue inhaler and nebs seemed less effective, my long-acting bronchodilators didn't seem very effective anymore either. We tried different ones, none of which seemed to make a difference.

Eventually we tried adding Nucala in, unfortunately, despite having had two shingles vaccinations, and previously had three shingles outbreaks, I developed corneal ulcers (3 on my left eye and 1 on my right) that were triggered by the herpes zoster virus. As a result I had to stop the Nucala, although it otherwise showed some overall improvement for me. But it didn't have any impact on my extremely high eos levels -- and we didn't know what other parts of my body they were damaging. Once we cleared up the corneal ulcers, and some asthma attacks after we stopped the Nucala, my doctor was able to get me coverage through a combination of Medicare (I am considered "permanently disabled" by all the medical problems and therefore was covered by Medicare early), and Medicaid in DC (which helps with copays and the cost of administering the Fasenra). And my life has changed in almost inconceivable ways.

In fact, not only have I not had any asthma attacks, my eos levels have been ZERO since the first injection last June (9 months ago), and even more fascinating to many of my other physicians, other non-related medical problems are improving in noticeable ways which have no other possible explanations (and I am very closing monitored).

There's no way to know whether it will work for you, but you owe it to yourself to see.

All this being said, you mentioned in one of your posts something I found more than a little troubling, and that was about not having some tests (or perhaps I just inferred that from something you said) and not understanding what the ones you had meant, and what indicators you should look for in medications? To me, these are indications that you might need to see a different, or a couple of different, doctors. Are you being treated by just a PCP now? Or an allergist or pulmonologist? Any doctor who is running these tests should be spending the time to thoroughly explain the results to you and what they mean to you, and what they indicate about your best options for medications. I've had to fire doctors before who were not properly caring for me, or were doing things that endangered me. Doesn't mean you have to be rude or in their faces, but ...

If I had stood up for myself earlier, I would not now be dealing with the level of disability I have, would not have faced some potentially fatal/extremely unpleasant ways to die pretty young in the past 10 years. Don't make my mistake. Sometimes you have to insist on what you need. Politely, always. But firmly. If money is an issue, there are ways to try to help, same with location. But no one will come rescue your lungs but you.

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HikesWithDogs

Thank you for a very detailed reply and sharing your incredible story! That is so helpful! Yes, the pulmonologist told me Feno result was 25 so I was normal but didn’t really say what the Feno was measuring, what the result meant, what the cut off was for abnormal results. The allergist just sent me my IgE and EOS counts and told me the 4 drugs I qualified for. I was denied by my insurance carrier for not having EOS =>300 for Fasenra but am in the waiting room after my 2nd shot of Fasenra thanks to the denied savings program offered by AstraZeneca. I have seen no improvement yet but I did get a new cat right after the first shot because I had siblings cats that my immune system had just gotten used to when one was killed. The other thing I was trying to figure out is how is e-asthma defined? All the biologic companies advertise that you need to get a blood test to measure EOS but they don’t tell you the number that = e-asthma. AstraZeneca has a doctor site that claims e-asthma is not a number (EOS number) but a type and lists several characteristics of the “type”. I think my allergist is trying what she thinks will get my asthma under control well enough for allergy shots but if I have your luck, I won’t even need allergy shot! I am curious, do you use long acting inhalers at all or just Xolair for your amazing results?

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d2read

Oh, wow. There are a lot of things in your message that are giant red flags with spotlights and fireworks to me. You have two different doctors performing tests with the bare minimum of explanation of what the tests indicate, what that means for you now and in the future, what your phenotype is (exactly what type of asthma you have and what it responds to, and doesn't), what your risk factors are, etc.

I'm not a doctor, and I can't advise you of what to do from a medical standpoint, but you've said several things in your message that are deeply concerning. If I were you, I would stop any additional treatments of any biologics until you can get a thorough work-up and evaluation by a doctor that is going to at least make a reasonable attempt to counsel you properly. Biologics are very serious drugs. They are not the latest fad drugs (despite the glitzy new advertising) -- they are last-hope drugs for those of us without any other options. For me, the alternative is a pretty unpleasant death, and fairly soon.

I would at least get copies of your charts and most recent test results and ask for second opinions -- perhaps at the Asthma and Allergy clinic at a medical school/university hospital in your city? Or see if the Asthma & Allergy Foundation of America might be able to provide a referral to a clinic near you (aafa.org -- it's a wonderful organization).

But it's true -- about "e-asthma." Doctors have come to realize in recent years that asthma is not one specific disease, but rather a whole zoo of slightly different creatures (phenotypes). For example, I have allergic asthma, which is now largely quiet, because of the Xolair. I have exercise-triggered asthma. I have asthma that is triggered by infections, even infections that aren't involving my respiratory system (like GI). But I have in recent years had many more that seem to be triggered by the extremely high eos levels. One of the strange thing about my HES is that it would cycle up and down, but we could never figure out what would cause it to either increase or decrease -- it just did. E-asthma presents differently, and responds differently (for me, for example, it doesn't respond very well to Symbicort and less well, but somewhat to Flovent), and one tip-off is that I don't wheeze anymore. My whole life I would wheeze when I would start having problems leading to asthma, but now nothing. Maybe an occasional transitory one, but very occasional.

Get your records together and get in to get a second opinion. Go in with a list of questions to ask -- do serious research ahead of time. Research your triggers and seriously think about whether you are prepared to make the sacrifices necessary to get healthy.

Good luck

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HikesWithDogs

Hi again and thank you again. While the doctors don't come out and give me specific detailed information I would like, I am sure they know it. My PCP referred me to both a pulmonologist and gastroenterologist. The gastro treated recurring morning cough by adding a 2nd dose of Prilosec at night. It worked like a charm but I am still using my rescue inhaler 1-2/day. Pulmonologist tested FEV1 and Feno and said I had allergic asthma, which I already knew, and thought the Allergist could evaluate me for the new biologic drugs and /or allergy shots. Allergist ran IgE and EOS and gave my the choice of biologics. I, like you, used to wheeze a lot as child before all the medication I take today was even available but now I don't wheeze, I cough or get in coughing fits I can't get out of without my inhaler and experience heaviness and tightness in my chest. I get out of breath very easily, partly from being out of shape. So the asthma symptoms are changing. Fortunately, I have not had any serious reaction to the Fasenra but unfortunately, no improvements either. To your point, I didn't feel well educated on the differences between the biologic drugs. So I did talk to a pharmacist at my insurance company. She said Xolair is for allergic asthma. Nucala and Fasenra are for lowering EOS and Dupixent is an entirely different and didn't go into details other than to say the reason they don't approve Dupixent until the patient failed on one of the other 3 drugs is because it can raise EOS. Yes, I would have liked for my doctor to have provided this information to me and recommend the treatment option best for me rather than giving me 4 choices and no information for decision making! You are so correct about that! I live in the US. Access to primary care is great but access to specialists and treatment can be painstakingly slow. I started with primary care in July of 2018 and didn't get my 1st shot of Fasenra until Feb 2019. It is a good thing I was not at risk of dying!

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d2read

Hi, Just wanted to check on you and see how things are going with your asthma and treatment. Have you learned more about your triggers and taken steps to reduce them?Have you started allergy shots? Have you begun any biologics?

I had my one-year anniversary on Fasenra, and celebrated. Went to dinner with a friend last night and walked four blocks with just two pauses during the longest stretch to catch my breath -- but the big thing was I walked it without my walker or holding onto my friend! A small victory, but a major one since I've had to use the walker since 2013. The summer heat and humidity still make things challenging, but infinitely better than before.

Hope your summer is going well and you've been seeing some improvements.

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HikesWithDogs

Hello! Thanks for checking on me! I have a lot of triggers which are largely unavoidable (pollen, dust, mold, plants, grasses, cats and dogs etc.) The Fasenra really hasn’t helped me that much but I am still taking it. My allergist won’t start on allergy shots until my asthma is under control. She sent me me to an ENT, GI and back to the pulmonologist. ENT said vocal cords were good and my problem is asthma. GI offered to test for EoE but admitted my symptoms don’t really match. I passed on that. Pulmonologist said I have decreased lung capacity due to air trapping. He decreased the Advair dose and added Spiriva. It has been a week and I am coughing a little more since the medication change. I go back for more lung function tests in 2 weeks. Pulmonologist seems confident he can “fix this”. Any idea what air trapping is or why it happens?

Other than that, I am holding up pretty well during allergy season. July is our highest pollen month, so after that things should get better and better...until it starts all over again.

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d2read

I have to admit I am finding the rationale and order of drugs etc used as kinda strange, but they are the experts.

“Air trapping” is what they call our inability to fully exhale. (I am assuming you understand the dynamics of most asthma attacks. If not, there are some good videos/mini-tutorials on asthma at aafa.org - the asthma & allergy foundation of america.)

You might ask if you could get someone to come to your home and help you figure out how to reduce your triggers in the home and prioritize them. For example, one woman I know never washed her pillows and hadn’t replaced them in years. She got new ones with dust-mite barrier covers she can launder every week and the pillows every month, and her symptoms at night and morning improved. She saved up and replaced her mattress later in the year, but until she could afford that, she got dust-mite barrier covers for the mattress and box springs, which helped.

I do things like keep books either behind doors on shelves, or in plastic boxes I can stack on shelves. It’s hard for me to part with my books, but I have so much less space now, and really don’t need my econ reference books anymore😀

Some insurance programs do have such help available. Helping you reduce your triggers - even buying you new furniture - would be a LOT cheaper than the ins co paying for a year’s worth of Fasenra ($60,000/yr - and you’ll be on it for life).

Also remember, allergy shots take years to become effective. But reducing your triggers plus lowering IgE.

Anyway, good luck. Let me know how it goes - here’s hoping you have a good summer!

Cheers, Debbie

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HikesWithDogs

Thank you for the really good tips! I pretty much gave up on reducing triggers because they are everywhere. I have the dust mite covers but I never wash them.

I truly don’t understand the sudden drop in lung capacity especially taking all that medicine.

I am happy for you feeling your life is infinitely better & I hope it just keeps getting better! I think I will buy some new pillows!

Keep in touch,

Sue

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d2read

I understand about feeling overwhelmed by it all, but make a start. New pillows and launder the bed and pillow casings. If you have central a/c, check into the better quality air filters. I had some I could wash each month. And good HEPA room filters help. I also use a dehumidifier, and cut carbon pre-filters to add to my window a/cs.

I bet you find that you are doing better after a few weeks/months.

Good luck!

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HikesWithDogs

Thank you Debbie for the HEPA room filters, dehumidifier and cut carbon pre-filter suggestions. I would not have thought of that. I have metal air filters that we can rinse for the central A/C which is nice.

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