Having been considered a severe and difficult asthmatic (previously brittle) for over 20 years, I have struggled to get anywhere really. This year they decided to retry Xolair which had previously given me suicidal ideation but now my IgE is only 33, which is ok but my RAST tests have come back practically negative. I used to test so severely to dust, pollen, milk and spores that I carry epi pens but now my dust which was a RAST score of 5 is now 1. Yet my reaction to all the allergens remains the same and last year hay-fever was so bad I had croup from May through to September and had pleurisy and a broken rib from it.
He said there is no doubt I have rhinitis and conjunctivitis but I am on massive amounts of treatment for it to no avail. He did start to explain that IgE mediated allergies can become something else where you still trigger to the same things but in a different way. He did go into how, which I would normally understand but I kind of switched off to be honest. Previously my methacholine challenge dropped my spiro enough to stop the challenge at the first dose so I have established hyper responsiveness. And I spent years being told I was non-compliant as my theophylline levels were always low and than I was accidentally given a gram of aminophylline in an hour and my levels only went to 19 and were back to 4 within 12 hours, so now I'm on silly high doses and actually have a therapeutic level
The plan is to aggressively reduced my steroid dose which was 40 two weeks ago when I had flu and now 30. THey want it down to 15 to repeat the eosinophil sputum induction and hope to get levels for reslizumab or mepolizumab.
I guess I haven't really asked a question yet and if you've got this far thanks. I just want to know if there is anyone else going round in similar circles and with have IgE mediated allergies becoming non and yet still being so allergically triggered
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NickyNoo24
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Hi, I'm not in the same position but can appreciate the frustration of being complicated/difficult and having a lot going on which they aren't sure about! I take it this is all from your consultant? He at least seems like he's trying to understand rather than telling you it's not there, but still very frustrating.
As I said I'm not in the same position but thought I might share some of my oddities round IgE and asthma as it confuses everyone and it's possible something might ring a bell or at least make you think it's not just you?
I supposedly have non-allergic, non-eosinophilic asthma and on the whole I'd agree with that as triggers are more consistent with not being allergic (ie mainly weather-based and irritant-based, but also botanicals like rose, lavender in any form - eat or be vaguely near, but not IgE-mediated as far as I can tell but acting as direct airway irritants. I react with asthma to mango but believe this is again not an IgE-mediated allergy and has developed quite recently). My IgE is also now low (28) but 7 years ago it was 1028 and then dropped to 80 on the next test so my consultant at the time spent half his time telling me I was neurotic because my asthma is odd, and the other half trying to get me on Xolair.I theoretically met criteria for mepolizumab recently with eosinophils of 0.3 but otherwise don't have raised eosinophils, just random slightly higher than usual FENO sometimes, but not usually in the context of an asthma attack so they decided not to go for mepo. As a result of not having the FENO and eos I rarely have pred as it doesn't seem to help - I was on it continuously for long enough to develop adrenal insufficiency, and still can't work out if it actually did much! However I clearly need some steroid as I really notice if I stop my inhaled steroid.
I never got Xolair because I met the severity but not the specific allergy criteria, and a few years ago when they tried again my total IgE was too low. My allergy blood and skin tests have always been negative, but I have hayfever which I think is tree-related, need to take fexofenadine and nasal fluticasone spray, and this winter found I had persistent rhinitis and needed to increase my nasal spray dose. I keep getting told montelukast shouldn't help as I'm not allergic but it does - not a wonder drug and less effective than it was, but helps day to day on top of other meds (though helps with exercise tolerance and it is also licensed for exercise-induced asthma, so maybe that's the element it's targeting for me). I did have a strongly positive mannitol challenge which appears to assess the pathway that montelukast also targets - I did my own research this time because my methacholine challenge in 2012 was negative which I still believe was due to them not stopping the meds in the right way.
So this was a bit of a ramble but I think my point was that while I'm not supposed to have allergic asthma, I have almost the opposite of you which is odd elements of allergic asthma and hayfever creeping in where they're not expected - I still can't work out if pollen triggers my asthma or just my nose! I hope this helps to see someone else with odd 'mixed' elements.
Crossing fingers that you can get the levels for mepo/reslizumab and that helps.
Thanks for replying. That sounds remarkably similar. I have always been phenotyped as paucigranulocytic but the hyper-responsiveness is my biggest issue. He was quite particular about stressing the fact that they do believe my symptoms and severity they just need to work out where it is stemming from. My triggers are definitely pollens, dust, milk, orange, fog, cigarette/cigar smoke, vapes, paint.
I know the prednisolone definitely helps the hayfever symptoms and it does help my asthma but only when I have managed to get it low before I exacerbate and so the change is significant. SO 35-40 does nothing but if I got down to 20 and went to 40 it does help.
Montelukast also helps, as did the sodium cromoglycate nebulisers before they stopped doing them.
I have managed to use the Easter holidays to reduce down to 20 so far so I should be down to 15 by the weekend and will see where we go from there. Part of me wonders why I take such large doses of Fexofenadine and Dymista if it isn't allergies in that way.
Are you under a secondary or tertiary centre? He is restating he would like me to go to the Brompton again. He also suggested bronchoscopies and bronchothermoplasty again though and they both terrify me as I was really poorly after my last bronchoscopy and they didn't even get any of the samples they wanted.
I think my consultant is thinking paucigranulocytic but he is clear as mud when explaining things and also seems to call only inflammatory driven things 'asthma' - so he does agree I have 'smooth airway muscle dysfunction' but then won't call it asthma unless there are features of inflammation like the eosinophils. Problem is he then writes confusing letters which I think are just going To make other drs think I don't have what they see as asthma. Then it all gets confusing because I have the odd Type 2 element.
That's tertiary- secondary had no idea what to do with me at all. Did you go to the Brompton before? I have been and found them not ideal with less typical asthmatics like me so asked to go elsewhere (can PM more if you like but I can get exasperated/critical in here at times so prefer not to say where openly). May be worth researching other tertiary centres ans then discussing with your current consultant? He sounds very helpful as much as he can be so sure he would be open to that but they often default to the Brompton as the most well known it seems. I had a similarly helpful secondary care cons (eventually...the others there were beyond awful and gave me complexes).
Crossed fingers on the reduction! I often wish I were more straightforward if I had to have annoying asthma.
hey! I am the exact same way!! Everything and i mean everything you said is what i experience breathing wise and experience with meds. I have hardly any eosinophils, no allergies via skin prick or blood and my IGE is “2” consistently. Yet i experience crappy breathing on the constant. My inhalers DO help open my airways up for a while but not that long and montekulast has an effect but not super great. My doctors think im nuts. I have irreversible obstruction that does not improve with albuterol on spirometry. Yet ive never smoked at all or been around smoke or chemicals or pollution and no history of bad breathing. This began when i got a simple bronchitis. Basically it never left! I do not have alpha 1 gene. And no acid reflux. Its nuts. Im tired. Its frustrating and doctors are unhelpful largely.
As you can tell I completely understand - it's really difficult to be atypical! I think there are still a lot of assumptions that asthma has to be a certain way. I can't remember if I mentioned it but I had mild, fairly typical asthma when I was younger. I only got worse and more atypical after I got swine flu in 2009. I've never smoked and don't have alpha-1. It does seem that some infections can just start things off, from my own experience and what I've seen here!
I'm not sure what country you're in - you mentioned albuterol which I've only seen used in the US, in the UK we call it salbutamol. If you are in the UK, I'd suggest calling the nurses on the ALUK helpline to chat things through and see if there's something you could ask your doctors about and how to approach them. If you're in the US, there seems to be a similar helpline for the American Lung Association you could try (no idea what it's like of course!). It can be helpful to chat through without the pressure of an appointment.
I also wanted to reinforce that even if you are based outside the UK, you're of course very welcome to use this forum for support. It's just that as you're probably aware, some of it might be specific to our system and not relevant to you.
I don't - at least not unless I'm having an attack when I can't reverse with salbutamol alone. I do have good reversibility generally.
I wonder though how much you were given when you did the test? It might be if you were already struggling and just got two puffs then it wasn't enough. My official level of reversibility on spirometry also isn't nearly as much as I can do at home. I have home nebulisers from my consultant (he otherwise is not very helpful but this was helpful). I can get way bigger reversibility with my peak flow at home than I do on official tests.
Part of this is I think that when I'm struggling to breathe, I find it hard to do spirometry properly and part of the reversibility is just me being able to do the test more consistently! And it's often so random when you do spirometry - you could look like everything is much better than it is on a good day and then not reverse on a bad day. I've done a spirometry where I didn't reverse even though I usually do - and I didn't even feel bad. I must have been struggling more than I realised.
Have you done peak flows before and after your albuterol/salbutamol at home? (And double checking peak flow technique though it may well be fine!) If you haven't, it may be worth doing for a week or two and recording the results. You may still not show a difference, but it might help to see if you do get some reversibility at home or not, even though it's peak flow not spirometry.
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