Need help understanding living with asthma.

[gremlin1]

Hi folks, I have been living with asthma for only about a year and a half after having an asthma attack that landed me in ICU for 8 days. I am okay now and have not had any incidents since. But the last year and a half has been problematic and confusing because I am constantly feeling like my airways are somewhat constricted almost every night when trying to sleep. It is never any of the other symptoms like wheezing or coughing. It was and is always a tight chest feeling. I was able to see an internist who performed an endoscopy and told me I did have GERD. Yes, I know all about how a lot of people with asthma also have GERD and if you have GERD, it can set off asthma. Apparently, I also have a high IgE count and an allergist tested positive me for dust mites and pollens. But for the most part I am fine except that I just don't ever feel right. My take on it is that ever since I was hospitalized and sent home and taking first Advair, then Breo and now Symbicort everyday, that medicine alone has possibly contributed to my not feeling right. My internist had me taking Dexilant(PPI) for three months which I am now off and I was warned that even carefully tapering off the PPI, GERD could still come back. But I was also wondering based on my own research that the inhaled corticosteroids can also cause damage to the Lower esophageal sphincter which would explain why acid would still get up into the esophagus causing chest tightness at night. Does anyone know anything about that? I was also wondering if you were just to take Singulair(pill) to control asthma, if that would be enough without having to inhale that steroid daily into your lungs to control asthma? I am quite frustrated with doctors in general. Very seldom do I ever get a direct answer to any of my questions and doctors seem to always answer those kinds of questions with risk versus reward as the stock answer. I'm even thinking about experimenting and slowly tapering off the Symbicort daily and eventually not taking it daily and have it on hand if needed along with a rescue inhaler. My spyometry tests are usually well above 90% and daily my peak flow meter averages 550(green). When talking to my respirologist, he seems to want to go further into the medication route by suggesting I try Nucala(biologic) since I have a high IgE blood count. I find myself resisting that direction as well. I have family members that also have asthma but they do not take a daily controller. If something happens, they just start taking a controller or jump right to their rescue inhaler. Sometimes I think I'm living in denial in regards to if I really have asthma. Meahwhile, I take a daily dose of Symbicort putting steroids into my lungs. If you actually read all of this....thank you. If anyone has any insight, I would appreciate any feedback. Thank you.

[Hidden]

I have a couple thoughts. I hope it helps at least a little. The daily maintenance inhaler (symbicort) will take a few days to reach full action if you stop it (gradually as your say since it is a steroid) and then need to use it again. It sounds like you are constantly in an allergen environment, which definitely contributes to athsma. I have a very hard time keeping up with dust in my house because I have allergies there as well. It seems to me that you need a daily antihistamine. Something like loratadine (Claritin) out levocitrizine (sp?) or Xyzal. I find singular extremely helpful, but don't need it year round.

There is one more piece I want to mention. Stress and anxiety play a huge roll in my chest tightness. I hear your frustration and wonder if your body is reacting to it. I don't do yoga or meditation. I get things taken care of and create routines to keep my days consistent. It takes out the controllable unknowns and eases stress that way.

I'm in the US. Your terminology implies you are not. I expect differences in protocols, but hopefully you have the option of getting second opinions, or seeing another specialist or 2 until you find one that works with you and answers your questions. It's a royal pain and takes forever, but well worth it!

Oh, for GERD, have you tried elevating the head of your bed so you are not flat? We bought a wedge for my daughter and it "cured" her.

Good luck!

[Troilus]

It’s a difficult one Gremlin.

Firstly, you have a high IgE. This means you are highly likely to get inflammation of the airways therefore you do need a steroid inhaler to keep that under control. Taking an ics twice daily is far better than leaving things to the point that you need to take steroid tablets, which can have consequences in the long term.

Having said that, different people have different experiences with ics inhalers. If you feel your current one does not suit you, then have a word with your health care provider. There are lots of different types.

As for GERD. I also have that. Maybe as a consequence of high dose ics, maybe not. But I do find that since taking Lanzoprozole about an hour before I go to bed I have had little to no problems.

Montelukast might also be useful for you, given your high IgE, but this would be in addition to, not instead of your current medication, in the first instance at least.

I think you need to find a medication regime that suits your asthma.

[Maxineto in reply to Troilus]

I use Symbicort every morning and take a Prilosec every morning for the GERD.

I try not to use the Symbicort during the day unless my breathing becomes more difficult like after walking my dog. I find that the Prilosec has kept the GERD from becoming active. Also, I sleep on a high pillow to keep my head and chest high. I have learned to just stay calm and take it slow because I've had asthma for 50 years and it just never goes away. When Spring arrives, I rent a tank of oxygen to help my lungs breathe easier. After all the allergies alleviate, I return the tank and just keep doing things slowly. It's difficult I know, but we have to do these things while having Asthma and GERD. It's not fun.