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Is it asthma

I have been receiving treatment for cough variant asthma for over 10 years. I have a daily maintenance asthma medicine, a rescue inhaler and a nebulizer. None of these are working anymore for my symptoms. I'm starting to question if I truly have asthma or if maybe I have been misdiagnosed. The only treatment I seem to respond to is prednisone. Does anyone else have this problem? I have noticed that as I have gotten older my symptoms have become more regular and difficult to treat.

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  • K8sMom2002

    Welcome, LG!  

    Asthma can be a tricky thing … are you under the care of an allergist or pulmonologist? 

    Prednisone is a go-to for many of us who struggle with asthma. Several of our members have been on maintenance doses of prednisone for quite awhile.

    What sorts of things trigger your asthma? What causes you to have to begin using prednisone?

  • Kathy P

    Hi @LG! I have cough variant asthma as well. Mine is mainly triggered by allergies and exercise.

    Did your medicines work before? And have stopped being effective? This can happen over time. I've had to change and add/subtract medicines many times over the years. I've also had my triggers change and/or become more sensitive over time – for example, my allergies have gotten worse over time, so I need to take more/stronger allergy meds and now allergy shots.

    Are you working with a doctor to ? My allergies and asthma really flared about a year ago. I've been working with my doctor to find the right combination of things for me that will allow me to do what I want to do.

  • LG

    Thank you for your replies. I have had allergy tests done but so far there's nothing coming back as a trigger. I did see my pulmonologist today and I'm back on prednisone. I've only had a blood test done to see if I have any allergies so now he would like to do a skin allergy test to see if there are any triggers. I'm just so confused… I've done the breathing tests and chest xray and each time everything returns back normal.  It's frustrating because I'm really not a medicine person and I wait until the 11th hour before I'll go and ask for prednisone but within this past year I've had to resort to that at least 4 times. I just belive that's way too much steroids but if I don't get them I'm miserable from the coughing. I just don't want steroids to be the only remedy to this issue.

    Thanks for your input!

  • K8sMom2002

    Hugs … we have other members who have non-allergic asthma, or asthma that isn't triggered by the usual allergies. 

    But besides things that people are allergic to. Like Kathy P asked, how did your medications work before?

    And having a bit of experience in "waiting to the 11th hour" myself, I've learned the hard way that it is much better if I either prevent attacks (lucky I know my triggers) or I treat them early and aggressively. I'm not a medicine person either, and for other reasons I can't stay on any extended length of prednisone, so I know how frustrated you must be.

  • Kathy P

    Sorry you are back on prednisone. Usually, needing oral steroids more than a couple times a years indicates that your asthma is not under control.

    Years ago, when I was first diagnosed with asthma, I didn't test positive to any environmental allergens except dust mites and cats. But I had nasal allergy symptoms all the time. Even when I was a kid. My parents took me for allergy testing and nothing came up positive. But no one could explain why I was always a congested, sneezing mess It wasn't until fairly recently that now everything shows positive!

    You can have non-allergic asthma. You can have many . I have allergic asthma and – when I exert myself in any manner, it can trigger things. I also have 2 different coughs – a loose, juicy one that is OK because things are moving around and then a dry, tight cough that is my asthma cough. That's the one that won't stop and I need to take my rescue meds and sometimes a cough suppressant as well to calm things down.

    It's good that you are working with your doctor to figure out what your triggers are and what the best treatment plan is. I think a lot of us tend to put off taking the meds thinking it's not that bad, it will pass. I've learned the hard way to treat early! And now I pre-treat for a lot of activities. Sometimes I look at it and think "wow, this is a lot of stuff just so I can do whatever" but in the long term, it's worth it.

  • green881

    >I'm starting to question if I truly have asthma or if maybe I have been misdiagnosed.

    Have you looked into silent reflux? I am curious about this.  It seems to be controversial.

    >I've done the breathing tests and chest xray and each time everything returns back normal.

    This seems a little odd to me, unless you have no symptoms on day of breathing test.  Xray is normal in asthma. Because you said cough variant I assume you don't wheeze audibly which is the most obvious sign of asthma.

  • Jen

    Welcome lg.  I'm glad the prednisone is helping. I think it's definitely worth a conversation with your doctor to see if you can do something differently.

    green881 – Interesting that you bring up reflux.  I know for many people, reflux can trigger asthma and vice versa.  It can sometimes be a vicious cycle.  Do you have reflux?

  • LG

    My doctor has ordered a CT scan to see if it's something more suttle. We'll see if there's anything that comes back. He stated he may need to change my medicine. This is the worst I have had within this past year beginning in November of last year. I can't think of anything that changed. 

  • Jen

    I hope the CT scan will help the doctor figure out what's going on.  When will you go for the CT scan?

  • K8sMom2002

    LG, here's hoping the CT scan will give the doctor some answers and some info to fill in the blanks! Hugs on the worsening asthma and the mystery.

  • green881
    Jen posted:

    Have you asked your doctor about the possibility of reflux?

    Heck no. I want them to work on my allergic rhinitis first.  Good luck with that.

    I've had asthma since before silent reflux was invented, so it can't possibly be that 😉

    Well I'm glad I can joke around about this stuff.  Not everyone can and that is what concerns me.  The reflux thing came up because a friend (who does not have asthma) had an endless cough for many weeks (keep her up at night) after walking pneumonia (she also had the same pneumonia 7 years ago). After many trips to many doctors, she was sent to an ENT who said immediately  "I see this all the time.  It's silent reflux".  Started taking the drug for that and after some days cough went away.  But you never really know if it would have gone away on its own.  We'll see if and when she stops the medication if the cough comes back.

    I know we're side-tracking the OP, but it's something to keep at he back of mind.  Why the first handful of doctors didn't know about silent reflux I don't know – I think it's controversial. I would say go with horses not zebras first, have the CT scan rule out some stuff look for triggers and allergies.

  • Kathy P

    One of the first things my doc does is try reflux meds when someone comes in with asthma! The most recent time I started having issues and current meds weren't working, the doc had me start reflux meds. Even though I don't have noticeable reflux most of the time. For now, I'm keeping it I'm my daily meds. Every time I slack on taking it, things seem to start to flare. 

    Might be worth the discussion with the doctor. 

  • green881
    Kathy P posted:

    One of the first things my doc does is try reflux meds when someone comes in with asthma! The most recent time I started having issues and current meds weren't working, the doc had me start reflux meds. Even though I don't have noticeable reflux most of the time. For now, I'm keeping it I'm my daily meds. Every time I slack on taking it, things seem to start to flare. 

    Might be worth the discussion with the doctor. 

    What type of meds for the reflux?

    Interesting your doc does that, I get he impression it is all the rage with certain docs, the rest are clueless about it.

    I've never had any noticeable stomach acid issues in last 20+ years but also I'm quite fit and eat a healthy balanced low-fat diet (no fried foods).  That's why I doubt it is likely but you never know….  Can they test you for silent reflux? I don't think my friend had any test, it was just like you say.

  • AS

    I'll just add my 2 cents – I have had asthma since childhood but never had any major problems since I was very young. This year I got bronchitis (in December) and it sent me into a huge asthma episode that I am still recovering from (it is now August). The Drs. told me it was allergic rhinitis + asthma and said it was all related to the elevated pollen and other allergens (this in Jan/Feb/March) – I have never had such severe symptoms before. They put me on Flovent (along with allergy meds + albuterol as needed) for several months and that seemed to do the trick, although I had a relapse about 3 weeks ago – had been off Flovent and am now back on (+prednisone taper). What I decided is that it is more related to overdoing things and maybe allergen triggers contribute – when it flared up I was exercising a lot in a gym where there isn't great AC and the doors are open all the time + I was doing heavy yard work. I have since resisted the urge to do yard work and have been feeling much better. School just started (I'm a teacher) and I have been running all day – I'm exhausted today and suddenly my chest is feeling tight again. So I think although the allergens can contribute, for me the exhaustion/stress seems to be a bigger factor, but that was never something the drs. were really considering as a huge issue (or telling me to limit). So long story short, sometimes I think the combination of factors may be as much at play as anything else. It took me months of meds and trial and error to figure this part out. Everyone here encouraged me to journal/keep track of when things were occurring and that does help.

    Good luck – I hope they are able to figure everything out quickly – it is miserable to feel so lousy.

     

     

  • Kathy P

    I've tried different types of meds over the years. I do get bouts ofreflux, so maybe that's why he wanted to try it even when I didn't feellike I had active reflux.I think they can test for it, but a med trial was simpler than testing.I know there is a pH probe and another test I'm blanking on.

  • Shea

    My reflux started after being on prednisone for a long time. I am on a relux med, zantac. Also, I took lemonade out of my diet because it was definitely causing my reflux to be worse. But, I hard the same issue with prednisone being the only thing keeping my sudden asthma issues under control, about 5 years ago. Turns out that my asthma was triggered by the cats and dog I eas living with while allergic and taking singulair, and that I had severe eosinophilia as a result, and it developed into a rare chronic allergic disease called churg-strauss syndrome. My general doctor missed the high eosinophil level even though it was present in my CBC bloodwork. I actually ended up having a heart attack from these allergic blood cell markers called eosinophils surrounding my heart and choking it off. Then, a lung specialist was able to diagnose me with CSS and told me that the disease ius becoming less rare and there are links to Singular, but they haven't proved causation, just correlation. Rheumatologist and Immunologists have been very helpful for me, they run a lot of tests that other doctors do not know about, and there specialties do not comprise just one organ, but the whole body. 

  • green881
    Kathy P posted:
    I've tried different types of armeds over the years. I do get bouts ofreflux, so maybe that's why he wanted to try it even when I didn't feellike I had active reflux.I think they can test for it, but a med trial was simpler than testing.I know there is a pH probe and another test I'm blanking on.

    A quick search of 2013 NIH article says endoscopy and pH monitoring suffer from poor sensitivity.  So that is the impression I had that it's difficult to get positive test result to confirm but patients are given proton pump inhibitor medication and some show improvement. 

    Now I can see why it's controversial.  

  • K8sMom2002
    AS posted:

    So I think although the allergens can contribute, for me the exhaustion/stress seems to be a bigger factor, but that was never something the drs. were really considering as a huge issue (or telling me to limit). So long story short, sometimes I think the combination of factors may be as much at play as anything else. It took me months of meds and trial and error to figure this part out. Everyone here encouraged me to journal/keep track of when things were occurring and that does help.

    AS, I think you're onto something there! Everyone's body is unique, and that makes everyone's asthma individual as well. 

    I've had docs suggest to me a trial of a med because a short round of the medication was easier/less invasive/less expensive than a test. 

    green881 posted:

    Heck no. I want them to work on my allergic rhinitis first.  Good luck with that.

    I've had asthma since before silent reflux was invented, so it can't possibly be that 😉

    Well I'm glad I can joke around about this stuff.  Not everyone can and that is what concerns me …

    I would say go with horses not zebras first, have the CT scan rule out some stuff look for triggers and allergies.

    Green881, I'm glad you can joke around, too — sometimes laughter is the best medicine, and I think I get your meaning.

    And yes, the old saying, "When you hear hoof beats, think horses and not zebras," applies very often. As a doc once commented to me, common things are common for a reason.

    I think reflux is pretty common in many people these days, but maybe not as well known as a trigger for asthma. Like I mentioned above, when my doc suggested something similar in the past, it was in the vein of, "Hey, this is an easy thing to try. If it doesn't, then at least we've ruled out the "easy" fix."

    Another thing to remember is that over the years what was common may not be common anymore, and new things become common.

    For instance, the American Cancer points out:

    Until the late 1930s, stomach cancer was the leading cause of cancer death in the United States. Now, stomach cancer is well down on this list.

    And it was when computers became so common that we started hearing about carpal tunnel syndrome.

  • Kathy P

    Hey @LG - I came across your post again when I was looking for something else. Did you ever figure out if you truly have asthma?

    AAFA has a new guide to help understand other conditions can look like asthma. It's important to get a correct diagnosis. You can .