Navigation

Azithromycin

Hi all! I posted this is Daily Roll Call, but there was too much traffic I think it got lost. I had a 3 month follow up with my allergist today. Several asthma symptoms have improved (less coughing, easier breathing, less use of Ventolin), except for my wheezing. So he's prescribed me long-term azithromycin, 3 days per week. I got an EKG too, to make sure I'm safe to take the azithro, tech said all looked normal. PLUS, I'm getting a blood test that alleegist wants for concurrent planning, like if the azithromycin doesn't work, there's another option I might qualify for. Maybe he's looking for eosinophils? Not sure! I'm one dose into the azithro. Anyone here have experience with this as an add on for persistent asthma? Thanks!!

26
182

Comments 26

  • K8sMom2002

    Hey, Amber! Thanks for posting this where I could easily see it! 

    I know some of our members have taken or do take azithromycin like you're doing — I'm trying to think who all it might be. I'll do a search and come back here and link to any discussion threads or replies I can find.

    What are your thoughts on the azithromycin? 

  • K8sMom2002

    Here are a few links …

     

     from another member

    And yet a third  reply from another member who takes azithromycin long term …

     … reply from one of the above members about what her doc told her about the azithromycin's role.

    Hope that helps, and thanks for starting this thread! It will keep it easy to find for other folks who are considering adding azithromycin to their mix!

  • dory2005

    Hi Amber!  I've been on azithromycin as an add-on (MWF)  for two months now, and along with the Nucala injection, I've seen an improvement in my severe persistent asthma. I normally do neb treatments every 4 hours, and I've been able to increase intervals to 6-8 hours. And when I do have a flare, I seem to bounce back faster. I've been able to taper to 22.5 mg of pred. Right now, I'm having a little flare, but I haven't had to increase pred, (just neb treatments) which is a win for me! My pulmo said that research has shown that azithromycin helps decrease inflammation in the lungs. I hope it helps you as well!

  • Amber Says Shine

    Thanks everyone! I'll check out the links you gave, Cynthia. After one dose, the rattle in my lungs is significantly decreased 👏 So that alone tells me this treatment will be helpful. My mom was worried about me taking so much antibiotic for so long, you know issues with gut health and antibiotic resistance. I already take a probiotic 4x/week so I'm increasing that to daily. And being the research lover I am, I searched on PubMed for articles on azithromycin and asthma. When I read my doc's notes from the appointment, he quoted the same article I'd found (from The Lancet, 2017) as justification for his treatment plan. I feel hopeful for the first time in a long time that I might maintain my current lung function instead of it just deteriorating over time.

  • Amber Says Shine
    dory2005 posted:

    Hi Amber!  I've been on azithromycin as an add-on (MWF)  for two months now, and along with the Nucala injection, I've seen an improvement in my severe persistent asthma. I normally do neb treatments every 4 hours, and I've been able to increase intervals to 6-8 hours. And when I do have a flare, I seem to bounce back faster. I've been able to taper to 22.5 mg of pred. Right now, I'm having a little flare, but I haven't had to increase pred, (just neb treatments) which is a win for me! My pulmo said that research has shown that azithromycin helps decrease inflammation in the lungs. I hope it helps you as well!

    Dory that's so great! That gives me a lot of hope! How wonderdul to not have to increase your pred during a flare. And longer stretches between neb treatments sounds amazing. Bug love and hugs! Thanks for sharing ❤

  • K8sMom2002
    Amber Says Shine posted:

    My mom was worried about me taking so much antibiotic for so long, you know issues with gut health and antibiotic resistance. I already take a probiotic 4x/week so I'm increasing that to daily.

    I hear your mom on gut health and antibiotic resistance … I have a healthy respect for antibiotics, and I never want to take them unnecessarily. 

    That being the case, most doctors are just as (or more) cautious, so it takes a lot for a doc to suggest it. I first ran into taking a low dose ABX daily when I was experiencing a chronic UTI that kept developing into severe pyelonephritis (kidney infection). For me, when we figured out the underlying cause, I no longer had to take it, but until then, it kept me from bouncing back into the ER with a potentially life-threatening infection.

    Sounds like you've talked to your doc about the risks versus the benefit and you're doing all you can to protect your gut health! And so glad you're feeling better!

  • Amber Says Shine
    Melissa G posted:

    Amber, how are you feeling? Do you think the azithromycin is helping?

    After my first 3 doses, I am feeling MUCH better. ❤  I have significantly less mucus and coughing. And my rib muscles seem able to relax more now that they're not working so hard (and that in turn makes breathing easier). It's quite a relief to finally have an intervention (or combo of) with a clear positive result! I'm praying our fire crews can get the nearby wildfire under control soon, to limit any further exacerbation. 🤞

  • Melissa G

    Amber that is fantastic news!! So glad to hear it. I hope and pray that the fire crews are able to get the fire under control soon. 

  • LK

    That is such good news that you are breathing better, Amber!!  

  • Amber Says Shine

    Two weeks on this new treatment and I'm breathing better than I have in YEARS. I rarely feel short of breath now, have minimal coughing, no congestion or wheezing. I'm astounded!!! 

  • LK

    That is wonderful news, Amber!  So happy for you!  Hope and pray you continue to improve so dramatically!     Bet you feel like a new person!  

  • Amber Says Shine

    Thank you, Lisa!!! I do indeed feel like a new person. I had gotten to the point of thinking that maybe I needed to accept constant coughing and congestion as part of my life now. Then the doc said, "Well, there's this one thing we can try…" So grateful!

  • dory2005

    So excited for you, Amber!!I've been on it for 2.5 months, and it's helped reduce flares.So glad that it's working well for you, too! 

  • Amber Says Shine
    dory2005 posted:

    So excited for you, Amber!!I've been on it for 2.5 months, and it's helped reduce flares.So glad that it's working well for you, too! 

    That's so great Dory!! Woot woot for effective asthma treatments! Here's hoping everyone here finds interventions that work well for them ❤ 

  • K8sMom2002

    Oh, my goodness! This is so great! I'm so glad that the new treatment plan is working, Amber and Dory! 

    Amber, it reminds me that we should always advocate for ourselves and keep asking, "Is there anything else we can try? Is there anything else that might be contributing to this?"

  • LK
    K8sMom2002 posted:

    Amber, it reminds me that we should always advocate for ourselves and keep asking, "Is there anything else we can try? Is there anything else that might be contributing to this?"

    Cynthia,  Good point.  It is so easy to get "stuck" in a routine and not remember to ask these questions.  Thanks for the reminder!

  • Amber Says Shine

    Hi all, I have snother update on my azithro add-on!  I had my 3 month check-in with allergist to see how the azithro is working. He said my self-report Asthma Control Test had the best score I've ever had since starting with him about 5 years ago. I actually started coughing in his office, when I hadn't coughed AT ALL in months 🤣 I even recently had a brief head cold that didn't fully settle in my lungs. I needed my Ventolin frequently, but didn't develop bronchitis which has happened every time I've gotten sick in the past couple years. It's a whole new world over here!! I've found that taking a probiotic every day and drinking kombucha on days I take the antibiotic help to mitigate any digestive issues. I still ocasio ally get some stomach upset, but it's manageable. Doc wants to get an updated EKG and then see me again in six months. Wooooot woooooot!!! Love to everyone, wherever you are on this journey. This community has helped me cope so much better and given me resources to share with loved ones ❤❤❤

  • LK

    Oh, Amber!!  I am so happy for you!!      

    It is so wonderful to be so improved!!   So glad you had such a good doctor's visit!  Go Amber!!     Here's hoping you continue improving!  Thank you for letting us know how you are doing!

  • K8sMom2002

    Wow! That's terrific! I love stories like this — when you have found what works and you're sharing with everyone! It can definitely be something that may help others as well.

    Love the advice about the probiotics and other strategies! It sounds like your doc was really surprised in a good way at how things have developed?

  • Amber Says Shine

    Thanks for the love, Lisa and Cynthia!  As to your question, Cynthia, yes he seemed pleasantly surprised by my Asthma Control Test scores. I've been taking all these different meds for soooo long, with okay results but still struggling with bronchitis and coughing and blah!  So he was pleased and relieved right along with me    He said I'm maybe the 5th patient he's prescribed the azithro add-on for that it's really helped. I told him how I saw that he quoted a research article in my treatment notes (my health plan - Kaiser Permanente – has amazing electronic health records), so I looked it up and read it. Plus, we had a nice laugh about how the folks at the Red Cross didn't know what to do with me when I went to donate and told them I'm taking an antibiotic for asthma treatment  (they ultimately let me donate & put me under the category of taking "preventive antibiotics"). A little nerve-wracking following a course of treatment that's so new, but also very exciting given the positive results I've had!