Severe asthma causing more trouble than typical exacerbations

[mamaScarlett]

I'm wondering if anyone else can relate to this and provide some insight.
Over the past few years, I get an asthma response to most infections and viruses that ends up causing more trouble than the infections themselves. I guess it's a question of which came first, chicken or egg?

My non cf children both had the flu, and despite having already had the flu this year and getting the shot, I got it again. This time it triggered an awful asthma situation. Extreme tightness, shortness of breath. Wheezing. I exercise frequently and can really see a difference in what I can tolerate during my asthma flares. Just can't get air in my lower lobes the way I usually can. Very frustrating.

At times, ill barely have sputum to speak of...very thin, light, almost white..yet still have tightness in my chest and wheezing. My pre and post pfts reflect asthma as well. Sometimes not as severe as I'd think though. It's more of a quality of life issue. Not being able to exercise the way I want, have stamina, endurance, etc.

Has anyone had success in better controlling asthma and finding better treatment? Any success stories to share? I am sick of living on steroids over the years.

Another theory I have is wondering the effects of years of steroid use, whether inhaled or oral. Steroids are often the go to solution for us. But I know they can stress your adrenals, and cortisol production which is responsible for the body's inflammation response. I'm wondering if anyone has ever gotten this tested and any conclusions that you came to. Could years of these meds be affecting my body's ability to control inflammation..? Though that's what the goal is, I think it ends up being a vicious cycle.

Thanks for any thoughts.

 

[beleache]

Good question... I will be looking forward to answers. My only bad experience w/ a asthmatic exacerbation was when my dr. wanted to stop my Advair to see how I could handle it. I ended up in hospital for a week on IV steroids ..

 

[Melissa75]

I'm curious about the responses you get too. My inflammatory response post exacerbation is often as bad breathing-wise as the exacerbation, even though the mucus looks better.

I'm on Symbicort and Singulair, and I try to eat all the good-for-asthma foods: fish, turmeric, green beans. Check if anything in your diet could be responsible for the uptick in inflammation.

I also get allergy shots in hopes of dampening my IGE response to what the tests picked up: dust, tree mold, cats. There are other inflammatory responses apart from IGE though, and there are other irritants that don't qualify as allergies.

As for the adrenals, I brought that up to my pulmonologist because of my hypotension issue, and he was extremely doubtful that I could have adrenal insufficiency from inhaled steriods alone. I haven't done oral pred in probably five yrs...since starting symbicort. I keep forgetting to get this article in front of him, though.
http://erj.ersjournals.com/content/32/4/1047.full.pdf

Looking forward to reading responses.

 

[jricci]

I just copied and pasted my response to First Exacerbation thread. It may have some relevance for you. However I have had a lot of problems even without an exacerbation, so I'm not sure if it will be helpful.

This has been my experience with increased inflammation over the last 18 months:


It seems to vary greatly for me from day to day. I've tried everything to figure out why some days are so much worse than others; but haven't found the connection. When I first started with the increased inflammation, I was tested for allergies (skin testing and blood work for IgE levels) and a sputum culture for aspergillus and mycobacterium. I also had a chest CT scan to see if there was something that wasn't showing up on X-rays. All of these tests were negative for me. Another thing that can increase lung inflammation is GI reflux. Even if you don't feel like you have reflux, there is such a thing called "silent reflux" where you don't have symptoms of reflux. I'm still in the process of ruling this out. I have a GI appointment next month. We did discover that I was having an adverse reaction to one of the medicines that was added for the inflammation (Q-Var inhaler). So don't assume that a med that was added is helping, it may be actually making you worse. One drug that has helped me with my shortness of breath is Spireva. I don't think it has had a lot of success with CF patients, but for some reason it has definitely made a difference for me. I started doing pulmonary rehab a couple of months ago and I do feel that this has made a difference as well.

 

[Aboveallislove]

What was your reaciton to the QVar? Our 3.5 son started about a month ago and I've noticed some issues but CF dr., ped, and GI said not Qvar? Would be interested in what yours were? What did you do instead of Qvar?

 

[jricci]

I was started on it for my increased wheezing and was on it for about 6 weeks and my shortness of breath had become much worse. I didn't really connect it to Q-var at first because I had been having problems even before I started it. When I went back to clinic my PFTs were at an all time low for me (37%). I didn't have a cold or any other typical signs of an exacerbation (besides shortness of breath). My doctor said that there's about a 1% risk (lucky me) of worsening asthma symptoms with Q-var. After stopping it, I immediately felt a difference. I did end up on a 3 week course of IV's and was able to get my PFTs back up to 48%.
Q-var wasn't replaced with anything else for me. I was already on albuterol, advair, spiriva for wheezing.

 

[mamaScarlett]

I started Duoneb last night. My infection symptoms post flu have basically stopped at this point. But the extreme asthma needs to snap out of it. I remembered the last time I was in the hospital, with this same scenario, I dc'd albuterol and they put me on Duoneb 4 times a day. So perhaps that will help break this cycle.