Asthma frustration
Hello,
Does anyone else get super frustrated with their asthma regime/symptoms? I am on Tezspire,advair, sprivia, douneb and azthromycin. Finishing off a taper of prednisone now. Ended up in the ER for the fifth time last year a week ago. Thankfully no admissions.I am classified as severe persistent. I have had asthma now for about two years. It seems like everytime I step forward I take two steps back. I do everything they tell me to do but I don't know if it's because I had flare after flare but I don't seem to be bouncing back as well. I've done extensive allergy testing and no allergies. I try very hard to avoid triggers and rest when needed. I even ended up ordering a medical alert bracelet just in case something happens. It's just super frustrating that I can't seem to get it under control especially when my regime was working well for a little bit. Any tips? Thank you for listening.
Hi Rose, and thanks for sharing your present circumstances with the community. I recall we had a good conversation with you back in September so, it's good to see you are re-engaging with the community.
Based on our previous conversation, as well as this most recent one, it would seem (to me), the doctors and you are still trying to figure out the best medication regimen for you to use. All this, naturally, may be complicated further when you were diagnosed and treated for COVID.
I remember you also shared (in September), that you have been diagnosed for about a year and at this time, it's reached the 2-year mark. For ease of reference, here is a link to our other conversation here on asthma.net: https://asthma.net/forums/inhaler-switch.
It's understandable just how frustrated you are feeling - it sometimes takes a while to bring one's asthma under more manageable control. I am optimistic since you also shared that at one time, the regimen you were on worked quite well. By tweaking the prescribed medications, that control may be achieved yet again.
Having been to the emergency department (ED) five times during the past year underscores the challenges of controlling your particular case. I am glad to hear you never required a hospital admission.
I am assuming you have your own private medical doctor - is that the case? If so, it is this doctor who should be collaborating with you on titrating the medication regimen to exert more control over the disease for you. Do you feel the doctor is working well with you?
Wishing you well,
Leon (site moderator asthma.net)Thank you. I actually do have a pulmonologist who works well with me. We just did some adjusting in November. I think part of the frustration/concern is I'm worried one of these ER visits (because I don't present with wheezing) I'm going to go to from respiratory alkalosis to respiratory acidosis. I read an article I think on here that you can still go into acidosis with having good o2 stats but I fully admit blood gases aren't my specialty 😀 Hi again, Rose, and thanks for your response and further explanation. I appreciate it! I am glad to hear that you have a good relationship with your pulmonologist, That relationship can go a long way towards successfully managing this disease. Adjusting the medication regimen sounds like the most prudent approach at this time.
It's understandable for you to be anxious about presenting to the emergency department (ED) again. One suggestion would be to have your pulmonologist provide you with a written asthma action plan. That way, whatever ED physician is on duty the next time you arrive, will be properly informed of how your attending physician (the pulmonologist) and you manage your particular level of disease. That should take care of the concern, too, about presenting with no wheezing present. Alternatively, the ED physician can be advised to call your pulmonologist directly to discuss your case first-hand. This works for any number of patients I provide care to on a regular basis and the arrangement is well accepted by all concerned. Perhaps this would work for you as well.
Generally speaking, the initial phases of an exacerbation of asthma may result in respiratory alkalosis (high pH and low CO2), with a normal oxygenation level. As the episode progresses, the alkalosis may transition to a respiratory acidosis (low pH and rising CO2), with a normal or decreasing oxygenation level. Should the episode progress untreated, the acidosis can rise further and the oxygenation level can continue to decrease. This is the generalized 'mapping' of an asthma exacerbation and does not necessarily affect all patients. However, rather than worry needlessly, my suggestion would be to stay calm and follow the asthma action plan. If the condition starts to worsen, the idea would be to seek out medical intervention and reach out for your private medical doctor. There is no reason to delay treatment when the episode is persisting or worsening even.
What are your thoughts?
Leon (site moderator asthma.net)
That sounds like a good plan. I meet with my pulm next week so I'll make sure to ask him then. Thank you!
thank you Hi again, Rose, and thanks for acknowledging my remarks to you. That sounds like a good plan - speaking at length with your pulmonologist when you next meet with him.
I will be very interested to hear all he has to say to you!
If we can assist you with anything before you meet with him next week, please let me or any other moderator / team member know. We are always here to help in any way that we can!
Warm regards,
Leon (site moderator asthma.net)
Thanks for posting this question! Some of my colleagues have already responded very well to your forum, but I wanted to chime in as well since I wholeheartedly get where you are coming from. The burnout is real! I spend way more time doing treatments and still have daily symptoms despite all the medications I'm on myself, so I understand the feeling. It can get even more frustrating when all the tests are ruling things out and every flare seems to take you to a new level. Reading your message sounds exactly like something I would write myself! I would say "stay strong, it gets better" but I know that sounds phony when you're going through it. All I can say is that I definitely GET what you're going through right and I know that you are strong enough to handle it. I'm sorry you're facing so many challenges and I sincerely wish you well. From one frustrated severe asthmatic to another, take care of your mental and physical health! -Corinne, moderator Thank you. I really appreciate it. You as well. 😀
