← Return to (MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Comment receiving replies

I have used our similar local “compound” for geographic tongue. So sorry you got the thrush. It is a problem with the inhalers. I only use mine when really needed- Symbicort or Spiriva. I have found that they can help clear up my airways a bit after I have just done my own ” clearing”. Right now I am taking extra meds as I got shingles over the weekend. I am lucky it is not a big, bad case, as I had the vaccine. But still, not a lot of fun!
I really appreciate your forum and all the work you must do! Have a good night!

Jump to this post

Replies to "I have used our similar local "compound" for geographic tongue. So sorry you got the thrush...."

Maryjo I also got shingles last spring….9 years after having vaccine. They put me on an antiviral med and neurontin for pain.It was shot lived and not too bad. I read that about 30 % of folks vaccinated still get shingles but not as bad.
I asked my ID dr at NJH re current thoughts on getting boosters for the vaccine. SHe said there is talk…..but that there is a much better vaccine being worked on in Europe and to hold out a few years for it. Terrid

Thanks for the info Terri .. if you hear about the vaccine from Europe let me know .. I think I’ll do a google alert on it! Hugs! Katherine

Katherine ….i think she said it would be a few years….terrid

Terri, interesting article:
London-based GSK has just submitted a Biologics License Application to the FDA for its shingles vaccine candidate, Shingrix. Though it is still experimental, the vaccine is proving itself superior to the standard vaccine from Merck & Co and could net British drugmaker close to €1Bn, says FierceBiotech. Katherine

To Maryjo and Katherine and anyone else who has thoughts on this concerning the use of inhalers: I was told to use my inhaler Symbicort twice a day, just for maintenance. I also have Ventolin on hand for when I really feel I can not get my breath, but that is rare and I may use it once every 3 or 4 months. Could I, like Maryjo, NOT use the Symbicort daily if I feel my breathing is normal? It would be nice to take something out of my “diet” of lung meds. Or does taking the Symbicort make for improved lung function when taken daily? I have missed taking it on some days, and notice no difference when I miss a dose. Any thoughts? Pamela

I have read conflicting reports about the use of corticosteroids with
bronchiectasis. Sometimes drs weigh the benefits to the risks and decide what is
best. I am supposed to be on symbacort, but I rarely use it partly because I
don’t think of it, and like you, I cannot feel the difference. Symbacort
not only opens airways; it fights inflammation. We don’t always feel these
things. Do some research on corticosteroids and make a list to discuss with
your dr. I will be talking about this at my next dr visit in June.

I have bronchiectasis, not MAC so I dont want to assume anything. I have been treating the bronchiectasis since 2009. All inhalers the doctor have given me were, ” try this and see if it helps. You decide if you need it”. So I have tried many. I had the same instructions as you with the Symbicort. I didn’t find any difference using it daily. So now I use it when I can feel the airways need clearing, not everyday. Like yourself, I hate taking so many ABX and NAC and vitamins, and try this supplement…The other thing that keeps me from everyday use is the possibility of thrush mouth. You can read Katherine’s reply after this one. But this is an opinion concerning how I feel about something, not what a physician wants for you.

Mine are not too bad because I got the vaccine. I am taking to meds for it to help with nerve pain and such. Uncomfortable, but bearable. My friend had it without the vaccine and it was horrible! Just another part of the golden years, right?

@pamelasc1, Pamela and Maryjo, for me .. I feel I really do need to use my two inhalers: Qvar and Atrovent twice a day. If I don’t I can “feel” the sputum just lying there and I can’t cough it up the way I need to until AFTER I have used my inhalers .. they seem to open the airway in a manner that allow me to expel properly. Each of our bodies are different .. and lung issues different .. so we need to do our ‘due diligence’ and just listen to our own bodies! Hugs! Katherine

BUT after some thoughts I realized some things I have been doing wrong and this is my new routine:
1. using inhalers PRIOR to brushing my teeth (had been using after)
2. using peroxide to dampen my toothbrush with toothpaste to brush (purchased a squirt dispenser)
3. using peroxide after brushing for toothbrush storage for sterilizing
4. am NOW going to be more dedicated to daily use 3-4 x a day of my “Magic Mouthwash” .. hmmm .. how can I complain that something is not working when I am not properly following direction?! I must admit that since it is refrigerated .. I forget to go to the kitchen and use it properly. I have NOW put up a note in a couple of places to remind myself! Will now see how it goes!

I think this routine will help oral thrush by keeping my Sonicare toothbrush sanitized daily. http://www.good-gums.com/sanitizing-your-toothbrush.cfm

@maryjo2sell, Maryjo good to know that having had the vaccine .. if you DO get shingles the nerve pain is not as bad! I am just hoping the FDA does not sit on approval of that new European vaccine! If I hear of approval I will let everyone know .. I for sure will be getting it! Hugs! Katherine