How to manage eosinophilic asthma for best quality of life?

Posted by marciaalongworth @marciaalongworth, Jul 4 7:23am

I had allergic asthma starting at age. As an adult it infection induced. At age 68 I developed allergic eosinophilic asthma. 3 years in, with Fasenra and other standard daily meds including Advair, Montelukast, Claritin, and nasal rinse with budesonide, it is now non allergic eosinophilic asthma. Flare ups last about 12 weeks. My main trigger appears to be exposure to a virus or bacterial infection when we are in a group setting outside our normal set of friends, or a GI reflux flare. I have terrible sinus infections with each flare. During my last flare up I lost my hearing in the left ear. While some of it returned, I have loud tinnitus in it much of the time. There is some part of every day that I just don’t feel good - light headed, or a cough, or tightness in my chest, short of breath, or cold, or no voice, or whatever. Have any of you who have this illness found ways to manage for improved quality of life ? My pulmonologist has assured me that I am doing all that I can. Looking for a needle in a haystack! Thanks

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mth13 | @mth13 | Aug 13 9:30am

In reply to @kathyjjb "@mth13 Thanks for posting! I did not know that and will definitely bring up to my..." + (show)

@kathyjjb Glad if this helps you.Many doctors are not aware of some side effects and this site is valuable as we connect our dots together. I have found an old fashioned product which works for my sinus stuffiness. NasalCrom has been on the market for many years. You have to take one spray each nostril every 4-6 hours and not blow your nose for maybe 15 minutes afterwards. It stops Mast cells from putting out histamines. It is mon steroidal and can be used with other allergy meds if needed. You have to keep it up for it to work but I have found definite benefit! Just keep it in your purse so you have it handy. Maybe keep a second one on the nightstand to remember each morning and night. Also do not use the generic form of azelastine sodium which is over the counter Astepro antihistamine. It has something in it which can make sinusitis worse! Stick to the azelastine sodium if taking an antihistamine nasal spray. We live with these health issues and if we are lucky we learn and pass those ideas on to others.
Keep learning!
MYH13

Sue, Volunteer Mentor | @sueinmn | Aug 12 11:18pm

In reply to @orangetiger "@kathyjjb this is off subject sort of but recently had ct scan found bronchiectasis and a..." + (show)

@orangetiger Are you sure the doctor said air sac? Sometimes, if we have had a cavity in our lung, it can collapse. Also, it is possible to have one lobe of the lung collapse from severe damage. I'm not 3a single, or even dozens of alveolar, which are tiny, would even be visible an image.

kathyjjb | @kathyjjb | Aug 12 8:32pm

In reply to @mth13 "I was prescribed Montelukast Sodium (Singulair) for my sinus and asthma issues and my condition rapidly..." + (show)

@mth13 Thanks for posting! I did not know that and will definitely bring up to my Pulmonologist during my next visit. I have mild asthma, BE, and reactive airways-so I get inflammation as a result of eosinophils. leukotrienes, neutrophils, and who knows what else. During allergy season Montelukast takes me from not being able to breathe to breathing fairly well. That said, my eosinophils have been elevated and want to make sure I'm not taking something for 1 thing, that is making something else worse.

kathyjjb | @kathyjjb | Aug 12 8:16pm

In reply to @orangetiger "@kathyjjb this is off subject sort of but recently had ct scan found bronchiectasis and a..." + (show)

@orangetiger I can't help you there. There are hundreds of millions air sacs or alveoli's, so saying collapsed "air sac" doesn't make sense to me.

orangetiger | @orangetiger | Aug 12 12:36pm

In reply to @lisalucier "@orangetiger - this article may be useful: - The Number of Alveoli in the Human Lung..." + (show)

@lisalucier thank you, it was very helpful

Lisa Lucier, Moderator | @lisalucier | Aug 12 8:58am

In reply to @orangetiger "@kathyjjb this is off subject sort of but recently had ct scan found bronchiectasis and a..." + (show)

@orangetiger - this article may be useful:

- The Number of Alveoli in the Human Lung https://academic.oup.com/ajrccm/article-abstract/169/1/120/8538909

orangetiger | @orangetiger | Aug 12 8:24am

In reply to @kathyjjb "Have you had a CT recently? I think a lot of us longterm asthmatics also get..." + (show)

@kathyjjb this is off subject sort of but recently had ct scan found bronchiectasis and a collapsed air sack. Wondering how many air sacks in a lung?

marciaalongworth | @marciaalongworth | Jul 6 8:57am

Thank you so much. Any trails of research that I can follow are much appreciated. ML

mth13 | @mth13 | Jul 6 7:56am

I was prescribed Montelukast Sodium (Singulair) for my sinus and asthma issues and my condition rapidly advanced to Churgg Strauss disease (EGPA). I read that Montelukast can Raise eosinophils in some people so that is a drug I will never take. I am now on Nucala, a biologic which manages my disease very well by lowering my eosinophils. I am very fortunate. Maybe you should consider removing Montelukast from your treatment regimen? Do some research on this drug and eosinophils?
I remember and relate to your frustration as it took me about 13 years to get my condition into balance and feel well again.
Wishing you better soon.
MTH13

marciaalongworth | @marciaalongworth | Jul 5 2:38pm

They do CT scan routinely whenever I have a flare - and if no flare, at my routine visits - but I have been wondering about Bronchiectasis. I take Montelukast. I will look into what Brinsupri is. I appreciate your response. I am so frustrated. And they are messing with my GI meds now, and that is making it worse. I am going to ask them to please leave that alone - I understand I have been on them a long time, and I understand the side effects, but I have enough problems without upsetting that apple cart. thanks again

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