How long should it take to get cough variant asthma controlled?
August 7, 2017 5:20 PM   Subscribe

YANMAllergist Filter: I was diagnosed with asthma for the first time this winter (I am in my late 30s). I've been seeing a specialist (an allergist at an asthma and allergy practice) since December and despite taking ALL THE MEDICINES, my symptoms are a lot better but I can't seem to get WELL. Fellow adult-onset asthmatics, how long should it take to find a regimen that controls my asthma, and when should I consider seeing a pulmonologist instead of or in addition to my allergist? Many more snowflake details behind the cut.

Let me explain - no, it is too much. Let me sum up.
-When I was a small child I nearly died of severe pneumonia. My parents were told that I had scarring in my lungs afterward and suggested I take up swimming to try to increase my lung capacity. I did not take up swimming, but I did sing in choirs and play wind instruments throughout elementary, middle, and high school.
-As a kid, I don't remember having usual rates of respiratory trouble.
-I moved to Atlanta for college in the 90s and have lived here ever since. Atlanta has notoriously polluted air and heavy seasonal pollen.
-Since college, about once or twice a year I would end up with a respiratory infection that lingered for ages. About every two years, it would end in a lingering cough that wouldn't go away until I was treated with a course of steroids. Sometimes I was also given an albuterol inhaler. I now suspect this was mild intermittent asthma.
The current issue:
Last November - the weekend after the election - there were some serious forest fires in north Georgia/south Tennessee and the Atlanta area was covered with smoke for several days. Afterward, I developed a nagging dry cough that persisted and got worse over several weeks. I visited my PCP, who gave me a steroid shot and an albuterol inhaler and suggested that if I did not improve I should see a specialist to be evaluated for asthma. These treatments helped the symptoms but only to a point, so I made an appointment with an allergy and asthma practice. The weekend before my appointment in late December, we visited family for the holidays. This family smokes inside their home. I was in the house for about six hours (I've always been sensitive to secondhand smoke, so we stay in a hotel) and that night I had severe issues with bad shortness of breath and coughing fits and had to take multiple albuterol doses.

When I saw the allergist they tested my lung capacity/peak flow and inflammation (NOX level) before and after a nebulizer treatment, and I was diagnosed with cough-variant asthma. At the time, the doctor said that my asthma was severe. They started me on a course of oral prednisone and a combination steroid/LABA inhaler (Breo). I felt a lot better on the prednisone, though I was still very short of breath much of the time and coughing a lot. However, I developed a sinus infection the next week and everything went downhill from there. My symptoms got worse, I needed another course of oral steroids, and I felt horrible.

In early January, I was so bad that walking from my desk to my boss's desk (not at all a long distance - just across the short end of the building) would have me coughing so hard and so short of breath that I couldn't speak and had to lean against a wall. I ended up having to get a medical exemption to telework for more than a month because the effort of getting to work exhausted me so much that I couldn't function.

Fast forward to early August. In the more than 7 months since my diagnosis, I've improved a lot. I'm back at work and can walk around and do most normal activities fine. If I take my albuterol inhaler first, I can even exercise at a moderate pace. But I can't seem to get to the point where every day or even most days are free of asthma symptoms.

Things I'm doing/have done:
-I have had a full panel of skin prick allergy tests, which showed only two allergies: dust mites and cockroaches.
-I have replaced the old carpet in most of the house. The downstairs is all hard flooring. The stairs and upper hall are new carpet. Only the bedrooms are old carpet (it is cost prohibitive to replace that carpet at this time.)
-I have removed all curtains from every room in the house except the bedroom. The blinds downstairs I have replaced with new 2.5" blinds that are much easier to keep dusted.
-All the downstairs furniture is leather or synthetic leather so it can be wiped down.
-My pillows and mattress are encased in allergen covers.
-I have a cat but I'm not allergic to him. He never enters the bedroom.
-I am currently taking the an inhaled steroid (Asmanex right now, but I'm on samples until we stabilize so I've also used Qvar, we tried Aerospan but I couldn't tolerate the bitterness) and a combo inhaler that is both a long-acting bronchodilator and a leukotriene modifier. I am also taking Zyrtec and oral Singulair daily, and I have an albuterol rescue inhaler. I have a prescription for "emergency" prednisone that I am supposed to keep on hand in case I start flaring so that I can start treatment before getting in to see the doctor.
-My strongest trigger is smoke. I also have some issues with some strong fragrances or exhaust. In the winter I was triggered by cold air. I seem to also have some issues on very hot, humid days. I avoid triggers to the fullest extent possible.
-I have traveled a few times since my diagnosis and it seems like on about the 3rd day of a trip I will start having an increase in symptoms and be able to do less in terms of exertion than I normally can.
-I went to New Mexico recently and my lungs really seemed to like the hot, dry air there. I had no symptoms at all until, again, day 3, and those were mild.
-I do have air conditioning in my house, with a frequently-changed highest-quality filter.
-I have had other lung conditions ruled out via chest x-ray.
-I am not having any heartburn. I had heartburn in the past but after losing a substantial amount of weight I have not been troubled with it in several years.

With ALL THAT, I still am having symptoms. The severity ebbs and flows. In May, I had a flood from a hot water heater leak and had to get the downstairs carpet replaced; both the effects of the flood and the effort to pack up all my dusty belongings to have the floors done caused noticeable worsening of my symptoms, but I hope that once we're finished moving back in, that will settle back down and be better in the long run. My symptoms range; I'll go a couple weeks doing pretty well, only needing to use my rescue inhaler one or two days a week, and then I will have a string of days where I have chest tightness and shortness of breath almost constantly unless I'm on the albuterol every 4 hours and the cough starts coming back. The severity of my symptoms is much improved from when I was at my worst, but I'm very discouraged that I went from essentially symptom-free to having this be almost always hanging around.

Is it normal for it to take 7 months and to still not have found a maintenance schedule of asthma medicine that will keep me symptom-free? Should I be seeing some other kind of specialist instead of or in addition to my allergist? People with asthma, did you go through this too? I'm so discouraged and frustrated and I just want to breathe without thinking about it again. I feel like I'm doing everything under the sun and it's made me BETTER but I'm not getting WELL. It's like I can get about 85% of the way there and then it either gets worse again or just stalls out.

My doctor does not use home peak flow monitoring; he says that people use the monitors too inconsistently for it to be helpful. Instead he uses the Asthma Control Score. (Using the assessment here: though you can find it lots of places). The best score I ever had was a 21, but usually I range from 16-19. The "well controlled" range is above a 20.
posted by oblique red to Health & Fitness (12 answers total) 4 users marked this as a favorite
I also got diagnosed with asthma as an adult, and also have a strong dust mite allergy (among others; not cockroaches though so I can't say much about them). I will say that some drugs did not work for me and a few even seemed to make my symptoms worse (I'm looking at you, Advair combo -- likely due to the delivery mechanism, but still). Some drugs worked very well for a while; at the moment I'm not on any asthma specific drug (just antihistamines for the allergies). Switching climates actually has changed my symptoms (both up and down, depending on climate) over the years since my diagnosis. I think it is normal for this to be a somewhat frustrating process, especially with an adult diagnosis where you just don't know what things feel like since it is all new.

I will also say that I have had much more success controlling allergens rather than using drugs to treat; allergens that couldn't be controlled externally were always causing problems even with a fairly strong drug regimen (although not as much as yours).

So if you're feeling like the drugs aren't enough, see what you can do about reducing the allergens themselves. If you're not going to move out of Atlanta (duh), then do everything you can within. You listed a bunch of items, but I can think of a few more (sorry if you're already doing them):

The bedroom is probably the most important place to control allergens, since you spend probably more than 8 hours a day in it. Particularly with a dust mite allergy. For me, when living in a humid place I need wood floor in the bedroom, all bedding (sheets+comforters) washed at high heat (at least 130F) at least once a week. No more stuffed animals in the bed; if it can't be covered in a dust mite cover, or washed at high heat, it doesn't go on my bed. I got an extra set of bedding to facilitate this so I didn't have to wash midweek if it was a particularly bad week. I absolutely always every day have to wash my hair before going to bed, because the pollen/smoke/dust it picks up during the day gets on my pillow and then I wake up later coughing. No clutter on bedroom surfaces, dust with microfiber cloth frequently, and if your curtains in the bedroom are particularly fluffy consider replacing with something you can wipe down or clean. Books or display items that can't be easily dusted should live outside the bedroom. If vacuuming needs to be done see if someone else can do it with you being away for a few hours until things settle afterwards; same with dusting or other cleaning activities that could expose you to dust. Consider getting a pollen/dust mask if you have tasks like moving/sorting things out after a flood or outside work to do.

I assume you've done what you can about cockroaches, but if not be aggressive; they're known for exacerbating childhood asthma so I'm sure they aren't great for adults either.

If you've really taken every possible step yourself, then yes, it's worth asking both your allergist and your GP (in order to get a referral to someone different) about next steps. Perhaps even a different allergist with a different approach would have more success, but what you're doing now isn't working and should be changed.

In my own experience, getting controlled the first time probably did take several months, but then it got better, and then worse, and better. It really only got 100% better for me when I got ruthless about controlling the allergens; drugs helped but I never found something that was perfect.
posted by nat at 6:22 PM on August 7, 2017 [1 favorite]

I have cough-variant asthma and saw a pulmonologist for several years when I was first diagnosed (as a kid). I think he was very helpful in finding a medication regimen that worked for me at the time. It never hurts to get a second opinion and pulmonologists know a lot.

Note, though, that I am constantly managing my asthma. This is not a thing where the doctor told me what medicine to take and then my asthma was well-controlled forever. I see my allergist several times a year to check in on my asthma symptoms and adjust my medication accordingly.

And like, weird inexplicable things will happen. I was recently told that the new weird sound in my lungs is atelectasis caused by my asthma, suddenly. Why? No reason! And no combination of medicines has fixed it. Or like, this whole week I've had to take my rescue inhaler every four hours. I cannot even walk up a flight of stairs. Who knows why. Every time a new weird thing comes up I go back to my doctor and we try to figure it out, which is why it's really important to find a doctor you like and trust.

I don't know. It sucks, dude.
posted by goodbyewaffles at 6:32 PM on August 7, 2017 [1 favorite]

Don't replace the carpet with good flooring in the bedrooms now if you can't afford to, but you've got to rip out that old carpet! If there's plywood underneath or anything, no matter how ugly, it's got to be better than the wretched cesspit of allergens that a carpet invariably contains. Just getting rid of every bit of carpeting in the house (aside from machine-washable throw rugs) can make a huge difference in allergy symptoms.
posted by artistic verisimilitude at 6:40 PM on August 7, 2017 [5 favorites]

I also (probably) have adult onset, cough variant asthma, and I can tell you that Asmanex didn't do shit for me. I spent a solid forty five minutes every morning hacking up gook on Asmanex. Flovent controls my symptoms best, though I still cough. It sounds like you're making all the environmental modifications you can. The key is going to be finding the right maintenance inhaler; that's kind of the bread and butter of asthma control. Everything else is just supplementary. So keep trying, and trying, and trying, insurance permitting; there's a lot out there. I'm on Flovent and I'm mildly displeased with how well controlled it's been recently, but overall it's worked really well for me.
posted by Amy93 at 6:48 PM on August 7, 2017 [2 favorites]

You mentioned heartburn and I might suggest that you be evaluated for GERD. Not all acid reflux shows up as heartburn. However, acid reflux can create a noxious burps (that you don't even notice) that irritate the bronchial tubes.

I am prone to long and lingering cases of bronchitis (think twice a year since I was a teenager), but since I've been on a PPI (like nexium) I have maybe one case of bronchitis that's more easily treated every 18 months.
posted by typetive at 7:23 PM on August 7, 2017 [1 favorite]

I use Symbicort which is a brilliant steroid inhaler. You can easily up the medication as needed. When lungs are great, I use a single puff a day. When I'm sick I can go up to 6 puffs.

Maybe try an antacid when coughing. Gaviscon. It's amazing what acid does.

I think you need a respirologist. Your asthma isn't well controlled therefore you need to get another opinion.
posted by Ftsqg at 8:46 PM on August 7, 2017

I also have cough variant asthma and my particular triggers are dust mites, fragrance/perfumes and some (as of yet undefined) chemicals. A couple things stand out to me:
1) New carpet and new flooring off-gas tremendously. For me the chemicals in new carpet, adhesives, paints and foam (memory foam, pillows and the like) cause my asthma to flare.
2) Fragrance chemicals are everywhere. Once I went fragrance free at home I started to get better. At this point I am so sensitive to fragrance that I don't go to 'the mall', I ask for a seat far away from others in a restaurant and I'm afraid to get on a plane. Maybe try removing all fragrance from your home- including cleaning products, shampoos, soaps and creams and laundry soap. Be warned that 'unscented' does NOT mean fragrance free.
3) If you are constantly being exposed to triggers then your lungs are constantly dealing with inflammation. Finding and removing all triggers is essential. You must remove that carpet.

I'm struggling with how to explain this, so bear with me. I feel like when I have a series of exposures that I can't control, it's as if my baseline inflammation rises for several weeks- it goes from a 2 to a 5 on a scale of 10- I have a deep ache-y feeling in my lungs and they feel a bit twitchy. At that point all it takes is someone at a party wearing terrible vanilla perfume to put me over a 7 and then my symptoms begin in earnest with a cough that prevents me from breathing. (Good times!) For me, albuterol helps, but the only 'cure' is to avoid triggers. I LOVE ME SOME STEROIDS- if they didn't fuck with your body so much I would take them ALL THE TIME as it's the only time I feel normal/healthy. I have made my home and (6yr old) car safe places for my lungs and that has helped tremendously.

Perhaps you are also living at a higher baseline right now? I know for sure that there's no way I could work in a closed office environment without damaging my lungs. I don't think that medications are going to make you well by themselves. You've got to get full-on serious about creating a healthy air home environment to give your lungs a safe place to heal. The meds are for taking the edge off triggers that you can't avoid. Get a washing machine with an allergen setting (uses more water to wash off the irritants), bathe before bed, no shoes in the house, change clothes/wash hands immediately upon arriving home and get a bagged hepa vacuum (dysons are horrible for allergens). All of these small things add up.

Best of luck!
posted by PorcineWithMe at 4:57 AM on August 8, 2017 [1 favorite]

I agree that you should see a pulmonologist, if only to rule out any complicating conditions. I have asthma that was diagnosed in adulthood & thought it was just really difficult to control until a pulmonologist diagnosed me with Bronchiolitis obliterans organizing pneumonia , which in my case was NOT visible on x-ray & required a CT scan & biopsy to diagnose. Not saying you have this, just that my PCP and allergist were unlikely to have ever figured it out because it acted like poorly controlled asthma.

Also, I think you should reconsider your definition of well-controlled. It's not unusual to use a "rescue" inhaler before you exercise if that's a trigger for you. Weather changes and humidity can be huge asthma triggers, too, and I'll often use my albuterol before going outside on a humid day, and it's been getting a lot of use in this damp New England summer.

My asthma control improved after I left a job where I was shut up in an office with constant recirculated air - are there any accommodations you could get at your workplace if you're triggered a lot there?
posted by camyram at 7:01 AM on August 8, 2017

I had symptoms like yours for most of my adult life, also following a childhood bout with pneumonia. Advair has been a lifesaver for me. It's been the one thing that's given me good baseline lung health, so my colds are much shorter and I haven't had bronchitis since I started it. I use my rescue inhaler much less, too.
posted by jhope71 at 9:38 AM on August 8, 2017

I just wanted to pop in and thank everyone for their insights. It really helps just knowing that yeah, sometimes it takes a while and it sucks and that doesn't mean that my lungs are like PERMANENTLY RUINED and I'll go full-out La Vie Boheme and expire in a garret any day now.

I have several promising avenues to pursue, both on the medication end and the environment end. I do think that the water heater drama probably has had a lot to do with keeping me at least a little inflamed - I have a small house with a lot of stuff and I've never been great with dusting, so the process of getting things packed up/moved out, doing paint and flooring, then unpacking again has likely stirred up a lot. I did take the opportunity to purge a LOT of items (was able to get rid of 6 bookshelves and a corresponding amount of stuff) so I hope that will be a lot healthier in the long run.

I know that working on the bedroom should be a high priority. Financially it just isn't possible to do the carpet right now (it's not the cost of the flooring alone, but of moving all the stuff that's in the bedroom in order to replace the floor) but I will be looking for opportunities to make other improvements (goodbye curtains and ancient blinds!) in the meantime.

I'm taking a course of Prilosec just in case I have some random stealth reflux contributing to the situation.

I'm seeing my allergist again next week, so I plan to see if I can switch inhalers and discuss potential other specialist consult or other avenues then. Anecdotally, lots of people seem to have a lot of success on steroid/LABA combo inhalers, so I'm going to see about possibly swapping around.

As for defining control - I'm fine with needing to use the albuterol before exertion and the like. But I would really like to find a combination of maintenance meds and environmental controls such that on MOST days of the week, I'd never get that looming chest-squeezy feeling or run out of air sooner than I should in the middle of a sentence. And all the control evaluation instruments I've seen seem to think that's possible to reach, so I really want to reach it! It's been really frustrating having gone from "I never have to think about my breathing, I just breathe" to "breathing is a Whole Huge Thing nearly every day."

On the slightly brighter side, I've already hit my insurance deductible for this year, so hopefully even if I do need to do something else it won't kill me financially? Fingers crossed.
posted by oblique red at 4:17 PM on August 9, 2017

Short term you could just sleep in your cleaned out low-dust living room. Even a good temporary air bed might give you better sleep than your dusty carpeted bedroom for now.
posted by dorothyisunderwood at 3:33 AM on August 10, 2017 [3 favorites]

Came in to make the same suggestion as dorothyisunderwood. I've been asthmatic most of my life; it gets really bad, to the extent of being difficult to control with regular medication, when I'm sleeping in a room with a high allergen load. Sleep downstairs for a fortnight and see if things improve.
posted by ManyLeggedCreature at 2:05 PM on August 13, 2017

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