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Asthma doctor versus Pulmonologist, asthma still not controlled

Hi all,

Adult on-set asthma. Been diagnosed as many things and had a few things ticked off the list. At first, mild persistent asthma. Then moderate persistent asthma. Reactive airway disease. Severe persistent reactive airway disease. It’s not VCD. Not a heart problem. Chest X-rays clear. …and I still cough, get short of breath, cough more at night, cough with exercise. Allergies to dust, mold and ragweed. I am on Breo Ellipta and xyzal and albuterol. I’m using albuterol 1-2 times a day, nebulizer at night 1-3 times a week. I’ve improved since June With asthma meds, but still having symptoms. My asthma doctor is crazy. She walked out on my last appointment when my sister was asking some questions we had. She refused to talk to me or treat me a few weeks ago when I was sick and having trouble breathing. She called it VCD and told me to use cough meds- no effect. And, I don’t have VCD!

I’m working on getting a new doctor. The ENT suggested a pulmonologist- but I can’t get one until February! Im leaning toward an asthma doctor. My symptoms respond to prednisone and albuterol and asthma doctors seem way more available. 

Thoughts? Ideas?

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  • Melissa G

    Shadowcat, who currently do you see for your asthma, an allergist or a pulmonologist? Both an allergist and pulmo can treat asthma. 

  • Shadowcat04

    I currently don’t have either. My asthma doctor is crazy and I’m leaving her. Right now I have the ENT who did my VCD assessment (that was negative) who is willing to help figure out my cough, if needed, but she recommended a pulmonologist. I also have my GP who has been an excellent fall back. So I’m without any asthma care doctor right now. 

  • Brenda Silvia-Torma

    Shadowcat04, Looking for a new doctor is a really good idea and I'm glad your ENT was supportive and provided you with the name of the pulmo. Here are a few thoughts I had while reading your post:  

    • Can the ENT call on your behalf to see if she can get you an earlier appointment? Sometimes doctors have better luck because they can advocate on your behalf and reinforce the reason for why you need to be seen sooner. 
    • Can your GP give you a recommendation to a new allergist? Perhaps that person will be able to get you in sooner than February?
    • You may have already thought of this, but can you ask to be put on a cancellation list? That might help too.

    Brenda

  • K8sMom2002

    Since you have allergies, are there any other allergists in the area that might take you in a bit sooner?

    To find an allergist near you, you can use the following two links:

    Could you reach out to your insurance company, explain what's going on and see if they have an allergist or pulmonologist that could get you in sooner?

  • Shadowcat04

    I have found an asthma/allergist that suggested I send over pertinent chart notes and he will look them over and decide if his office can “be of help”. I’m going to take the notes (edited for the ones the crazy doctor wrote that we’re not what I actually said or what actually happened- the office said to go ahead and edit them) and hopefully that might work out. I have a good recommendation for this doctor. I have been feeling more symptoms the last couple days so I really hope I can get a doctor soon. 

  • K8sMom2002

    Oh, that's great, ShadowCat! It will be wonderful for you to get that opinion without having to wait for an appointment … and you can decide whether this will be a good fit more easily. 

    Sending good your way!

  • Brenda Silvia-Torma

    Shadowcat04, So glad you were able to edit the records to reflect what really was said and what happened! Did his office tell you how long it would take to get a decision from them? Are they not officially accepting new patients and that's why there is a let's review records step?  

    Fingers crossed that this is a good fit!!  

    Brenda

  • Wheezy Me

    Shadowcat, I hope the new doctor&office will be able to help you. Adult-onset asthma is often harder to control but there are many possible treatments.

    Wishing you luck!

  • Shadowcat04

    I hadn’t heard that adult onset asthma is harder to control. It sure seems like this has yet to be under control. What other things should they be trying? I don’t even know what to ask or expect?

  • Brenda Silvia-Torma

    Hi Shadowcat04, Have you tracked your "symptoms/medication use/air quality/activity type" on a chart? That could show the new doc what your asthma's severity and persistence is like as well as in what circumstances you experience more symptoms. That might be a good place to start?

    Your appointment with one doctor is in February, correct? When will you find out if the new pulmo will accept your case?

    Brenda

  • Shadowcat04

    I have been keeping a pretty detailed diary of peak flow rates, coughing, SOB, sickness, med usage- especially prednisone and albuterol, but also changing maintenance, triggers, etc. So, not a chart- but quite a bit of info. I’m pretty confident that I am triggered by air quality, smoke, mold, dust, and exercise. There are other things I haven’t figured out yet, I’m pretty sure. 

    I did not make the Feb. appt. -it wasn’t even with the person that had been recommended. I DID go into the nnew asthma doctor’s office today and drop off chart notes and they had me make an appointment in case it’s a good fit- Dec. 27. Much better than February. Hoping I will stay pretty well until then. 

  • K8sMom2002

    SO glad you were able to get an appointment for Dec. 27! Sending good that this doc is a good one who will be a great team member on your asthma management team!

  • Shadowcat04

    Still having intermittent coughing. Needing my inhaler every couple days or so. Still bothered by several triggers but the maintenance meds seem to have made the asthma overall more controlled. 

    I had another odd breakthrough finding new asthma doctors. I have my new appointment with an asthma doctor next Thursday. Last week I got a call from my original pulmonologist to make my follow up appointment. I guess I never actually told them I was “leaving” their practice. I made a follow up with my original pulmonologist in February. 

    Unfortunately, in the moment, my kids are both feeling sick and I think I’m catching it. That is the last thing I need during the Christmas craziness coming up over the next few days!

  • Melissa G

    That is great to hear that your asthma is more controlled! Yay!  Good luck at your appt on Thursday. Update us when you can. 

    Oh no, I hope your kids feel better soon and that you don't get it! 

  • Wheezy Me

    Shadowcat, that's good news! I guess your doctor's next step will be increasing your maintenance regimen (either increasing the dose or adding another type). What are you taking now?

    Good luck on your appointment!

    And speedy recovery for your kids… Hope you all feel well during the holidays!

  • Shadowcat04

    Hi Melissa- thanks for checking on me, that was sweet. Wheezy me- I take Breo Ellipta 200/25 1 puff daily, xyzal 1 tablet daily and albuterol inhaler 2 puffs, as needed. I also have a RX for prednisone oral, from my GP in case I get a flare and can’t get in to a doctor (especially since I haven’t really had an asthma doc the last 5-6 weeks). 

    Today I am feeling a bit down. My chest feels tight, but my peak flow this a.m. was okay. It’s been lower the last couple of days. I just feel “off” and SOOOO much to do. Last minute Xmas and grocery shopping right now, company comes tonight. I am looking forward to Dec. 26. 

  • Melissa G
    Shadowcat04 posted:

    Today I am feeling a bit down. My chest feels tight, but my peak flow this a.m. was okay. It’s been lower the last couple of days. I just feel “off” and SOOOO much to do. Last minute Xmas and grocery shopping right now, company comes tonight. I am looking forward to Dec. 26. 

    I hear you! It seems there are not enough hours to get the last minute stuff done! I have a feeling I will not get much accomplished on Wednesday besides relaxing and watching tv. 

  • Shadowcat04

    I saw my new asthma doctor! He seems really good. He listened really well, read all my notes, answered my questions. He classified my asthma as “GINA level 5”, severe persistent or asthma very poorly controlled. He wants to try a biological (like Xolair). He sent me to get a blood test, which I did.  My eosinophils were too low to be eosinophilic asthma from what I’ve read. My IgE level was 18. What I read on qualifying for Xolair is that you should have an IgE level of 30-400 and a year round allergy (that I have- dust mites and mold). 

    Does anyone know more about taking biologics? Or Xolair? Can being on xyzal for 2 months have lowered my IgE level? 

    He also started me on singulair- but, I’ve had headaches, anxiety- almost OCD and I’m not sure I can keep taking it. 

    I see the new doctor again next week. 

  • Wheezy Me

    Hi shadowcat! I'm glad you found a good pulmonologist who takes your asthma management seriously and has treatment to offer.

    I don't know much more about Xolair than what you wrote- there are certain lab threshold to justify treatment. Maybe xyzal does affect levels (I guess you weren't taking prednisone at the time of the test, right?). Ask your doctor about it, maybe you should stop it for a while and retest…

    There is another group of biologicals that are used in eosinophilic asthma, called IL-5 inhibitors (Fasenra, Nucala, Cinqaero). I guess they have an eosinophil level requirement as well, though.

    And even if you don't qualify, do ask him if he has some other way to start a biologic- sometimes they can enroll you for a clinical trial etc.

    Get well and keep us updated!

  • Brenda Silvia-Torma

    Hi Shadowcat04! So glad to hear that you had a good appointment with your doctor. Can you call him to talk about the side effects that you are having? He may want to change your dosage or prescription.

    Last fall, I was taking albuterol every 4-6 hours for about three days (diagnosed with bronchitis again) and it took me a while to figure out that the albuterol was causing me to be really emotional/weepy. It was also making it difficult for me to focus when doing creative work. After talking with my allergist, she had me stop the albuterol (unless I was having trouble breathing–I wasn't) and just take my controller, Qvar.  A day later, I was much better. I could focus again! 

    I hope you had a wonderful holiday!!

    Brenda

  • Melissa G

    Hi Shadowcat04! It sounds like the appt was very productive! 

    Yikes on the side effects from taking Singulair! Have you talked with the dr about it yet? 

    I am not sure about what you can and can't take when you are taking a biologic. Can you reach out to the dr and ask him some follow up questions?

  • Shadowcat04

    My next appointment is on Wednesday.  My breathing feels a little tighter than last time. I went skiing with my son 2 days ago and my breathing has been a little worse since then. I used albuterol before I started skiing and every 3 hours or so while skiing, which helped. The cold air, exercise and altitude were tough, BUT it was wonderful to be up on the mountain with my son. It has been a long time since I have done something like that with him. Maybe I shouldn’t have done it, but it was an experience that he and I will always remember. We’ll see how my breathing is at the doctor’s on a Wednesday. 

  • K8sMom2002

    Shadowcat, so glad you have a good time skiing! Experiences are wonderful treasures to have! 

    I know that other folks here have used biologics … but I'm not sure if antihistamines would affect the test results. I know before skin prick testing, we have to withhold antihistamines and some other meds, but we don't if it's blood testing for allergies.

    Was the appointment today or next Wednesday? If it's next Wednesday, could you mention your issues with the Singulair and ask your doc if the Xyzal would have made a difference? It sounds like you have a keeper of a doc there!