To those who are on "systemic" drugs for allergic asthma, what do you notice in terms of control of your lung symptoms vs control of allergic symptoms in the eyes and the nose? Do the systemic drugs resolve the lungs, nose, and eye symptoms altogether, or do the drugs only work for some, but not for all symptoms?
I apologize for the long text that follows. I am on Benralizumab (used to be on Xolair, they have switched me 3 months ago in hope to control my asthma better), 2 mg prednisone daily. I am also on Advair and Trimbow. All of these are to control allergic asthma: I am allergic to every wind-pollinated plant in every part of the world, dust mite, dogs, etc [as shown with blood tests and scratch tests]. I also used to have runny nose and runny eyes all of my life for which I would take chromolyn drops.
With the systemic drugs I am now on, my eye and nose symptoms are gone (my wife is jealous, actually). So, I suppose, the drugs worked for these (even though this is not what I take them for). The asthma remained. I would trade my asthma symptoms for having running nose and eyes any day. OK, I do not feel the urge to go to the hospital every day, but I still have to wear an FFP2+charcoal mask whenever I am outside, I cannot be in a room with carpets, in libraries, in old buildings, near smokers etc. If I let my guard down for too long (1 hr+), I need to take my blue inhaler to make it through the day (I take it pretty much every day). I sleep in a tent with HEPA and charcoal filtration which allows me to get enough rest during the night. Generally, I only take a mask off only when I eat, or when I sleep inside of my tent. Exercise is in a 3M chemical protection respirator.
I always thought that the same allergic mechanisms were behind the eye/nose symptoms and in the lung symptoms, and yet in my case it appears that different things are going on. Other things like montelukast, nasal steroid sprays, nasal washes etc do not do anything. The only time I felt sort of controlled (to the point of being able to do mountaineering trips and marathons) was when I was getting specific allergen injections in the USA. 20 mg prednisone helps (especially the first 2 weeks), but it has side effects, so I was able to wean it down to 2 mg per day.
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There was a publication on several chinese herbs ("ASHMI", googlable) supposedly as efficient as prednisone. I got the herbs from China and made crazily bitter tea from them. Nope, no effect at all.
I'm glad you said they don't work! Usual reminder for anyone reading to be careful with herbs - they can interact with other medication, potentially contain asthma triggers, and are not a replacement for usual asthma medication (which this post does show!)
Cripes, you are allergic to life! When I had the scratch tests done years ago and was found to be allergic to every one except water and the control, the dr. fell about laughing and dragged colleagues in to look. I was advised to go live on a lighthouse as there's no pollens out at sea, but I expect there's other things..
I take Cetirizine when needed, have Flixotide x 2 bid and Ventolin when needed. My allergies are far less than used to be and you can grow out of them apparently. Hope you get some relief. There is a theory that your system needs a tiny amount of what irritates it in order for it to respond with anti histamines, antibodies etc. Most of us have to put up with various reactions but yours sounds most extreme. Have you tried allergy clinics, maybe desensitisation? Good luck.🤞
No, Cetirizine is only for allergies,OTC, but my allergies induce asthma so I try to prevent any triggers for both. Up a mountain in Switzerland should help both! Frankly if it doesn't maybe you should be looking at other diagnoses for your problems? Seems like you've tried just about everything, maybe a new approach would be helpful? Good luck. 🤞
I'm not on a biologic, if that's what you mean by systemic. But a couple of observations:
- I know people who have been on the anti-IL-5 biologics and on Xolair, and they've found it only addresses some triggers. Yes, IgE and eosinophils are linked, but it seems in practice that if your asthma is driven by both, the biologic doesn't necessarily address both drivers. Not heard of anyone getting rid of the eye/nose but not the asthma though! It more often seems to be they still get all the allergic symptoms, asthma, eye, and nose, on the benralizumab still, but not the eosinophil-driven ones. Or allergic ones reduced on Xolair but not eosinophilic
- Not sure if this helps, but I have non-eosinophilic, non-allergic asthma, and also hayfever. This confused me so I looked it up, but it is possible! Hayfever is annoying, but it doesn't really seem to interact with my asthma much as far as I can tell (it's hard to tell, because I still get plenty of asthma in spring, but I don't think pollen makes it worse).
It is possible to have eosinophilic rhinosinusitis, often with nasal polyps, with raised blood eosinophils. If that's what's driving your nose symptoms, it could explain why the benralizumab has helped them, but your asthma may be driven by other factors as well that aren't being addressed by an anti-eosinophil biologic. I feel like having more than one driver is more common than is acknowledged. I personally suspect I have a relatively well-controlled eosinophilic side and a poorly controlled non-eosinophilic, non-allergic side which no one understands or is really interested in.
Beautiful afternoon here in Glasgow - I have asthma and urticaria Was prescribed Xolair for my urticaria but it has also helped my asthma Been on it for 3 years now has transformed my life On max dose of in
Do you feel Xolair did it for you, of all the other drugs you are on? I need to ask my doctors about the other inhalers you are on.
I was on Xolair for 1.5 years, it stabilized me, but it did not change my life like it did for you. So they switched me to B... which I have been on for thee months for now, haven't noticed any effects so far.
I can sympathize with the frustration you obviously feel -- I, too, am allergic to almost every conceivable thing. And every so often we discover a new one. (Last year it was APPLES and a few years before it was CARROTS! I'm someone who was referred all the way up the ladder to the top US expert in antibiotic allergies -- and tested extremely allergic to sterile saline.)!
You don't say how long you've been on the various drugs, but my med team and I (in consultation with the NIH in the US) eventually came up with a cocktail of sorts:
Fasenra/benralizumab (anti -IL-5) for my HES, eosinophilic-asthma, -emphasema, -fasciitis, etc.
Xolair/omalizumab (IgE) -- it took almost 5 years just on this before I began to see substantial improvement in allergic symptoms, but the twi drugs together have been much more effective . In fact, I had no asthma attacks or major allergy-induced asthma at all in 2022 -- first year of my life that's been true.
It's amazing that it took 5 years for Xolair to work! Where in the US did you get both mAbs prescribed? I got Xolair at UCSF and was getting it for 6 years, then I stopped (should not have!) and started again in 2013.
I could have written this post myself because everything you wrote, sounds exactly like me. Unfortunately the Dupixent (same category of drug like Zolair and the one you are on) does absolutely nothing for my allergic asthma. I'm allergic to every grass, trees, cats, dogs etc. Lately there has been a lot of stray cats roaming around my building. I try to avoid them but it's almost impossible to do so. I was in the hospital for 3 days in April after my asthma kept getting worse and even 30 mg of Prednisone wasn't helping. Maybe my body has gotten used to that amount. The Prednisone had elevated my blood pressure sky high too as I was retaining water.Right now, only 40 mg of Prednisone really makes a difference. Like you , 20 mg only works for a couple days, maybe weeks, again maybe my body has gotten used to that dosage.
I'm super reluctant to increase it on a daily basis. I also notice that I have throat constriction when I start flaring up. Maybe this is indicative of allergies.
I will talk to my pulmonologist soon to come up with a plan. The Prednisone has made me diabetic and overweight.
Did they mention desensitization? I did it in the USA, but I stopped once I went to the UK (I was hoping that XOlair alone would be OK, and they do not do desenzitiation in the UK on the NHS). I now hope to try it again here in Germany/Swtizerland. They do it here on the national insurance (but they also do homeopathy on the national insurance -- haha!)
Prednisone is a great drug short-term (makes me jumpy though!), but in the long-term it's bad news. I have gained 15 kilos on 20 mg/day, and I have lost it back after tapering down the prednisone to 2 mg. The tapering down was an adventure on its own and took about 6 months, I believe that me wearing the FFP2 mask all the time is what allows me to stay off high doses of prednisone.
I tried the allergy shots for a while but it made my arms swell up and hurt, so I would take 20mg prednisone before the shot and the doctor said that was defeating the purpose!! It was rough. It made me sicker actually! It was getting expensive too as I was going 3 times per week at that point! Then work hours started interfering with the times I could go in for the shots. Sometimes I feel like I need to give it another try, because right now, only 30 to 40mg of prednisone is helping me and I know I cannot live like that forever. Btw, I'm in the USA.
My asthma + Lung treatments r no help to rhinosinusitis or eye probs,even fasenra but hospital have suggested changing me to one that does - 🤞.here's hoping
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