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Have MAC with pseudemonas
Hello - this is Pam in Sudbury, MA. I have not been on the site for some time now, but was when I first came down with MAC in 2015. Recently I have been getting many pseudemonas infections and my lung doctor wants to try the inhaled drug "Cayston". I have several questions: 1. Has anyone also had numerous cases of pseudemonas and how did you deal with it? 2. Has anyone used Cayston, how long did you use it, and did you have any side affects? The doctor feels that even though I can get rid of the pseudemonas taking the drug Levofloaxin (which I have been taking on average every 2 to 3 months), it now comes back because it is either getting resistant to the Levo or that it really never goes away and just sits there until something urges it to rear its ugly head. Has anyone used other therapies to keep the pseudemonas at bay, such as taking in the nebulizer albuterol once a day, and the saline solution once a day?
Any advice will be greatly appreciated. Thanks, Pam
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Thank you! Could you send me the name and contact information about that company?
Nancy
That is a very good question. I cannot seem to get a straight answer on that. I have mucoid strain and based on that my Pulmo said I will never get rid of the Pseudo. I am his only non CF patient with mucoid strain. I guess mucoid strain is common with CF? Considered the hardest to deal with. The biofilm is more? But then non mucoid strains seem to also be chronic as people report getting PA "over and over". I think it just retreats and comes back mucoid or not!
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2 ReactionsI use the Pari Sprint nebulizer cups. I get them on justnebulizers.com and there is an option for a mask.
https://justnebulizers.com/products/pari-lc-sprint-reusable-nebulizer-set-2?_pos=2&_psq=pari&_ss=e&_v=1.0&variant=28293603229768
Thank you so much!
This is Pam in Sudbury getting back to all of you on your excellent responses to my original questions about pseudo. As always, this group comes through for me with common sense solutions to complicated issues so I thank you very much! I am 75 years old, and I feel over the last 10 years it makes sense that the pseudo has simply colonized in my lungs, thus the more frequent incidences. When I thought I had pseudo, I would take a sputum sample in and that always showed it. The Levo, which I have now taken over a 10 year period, has always cleared it up but now I am taking it more frequently ( 3 or 4 times a year) - a course of 10 days and it was gone. I never had tendon issues but I did suddenly get mild neuropathy in my feet and I am sure it was the Levo which caused this. Because I had a very bad reaction to inhaled Toby, I suspect the Cayston will be the same. From all the information you have provided me, I have come to the conclusion not to take the Cayston, but to do a daily course of inhaled Albuterol + 7% Saline, twice a day. Just makes more sense and many of you are firm believers in this approach. I cannot thank you enough for your help. I will be back in touch in a few months to let you know how this has been working and I will continue to follow all the emails. Best to you all, Pam
Hello Scoop - when you wrote that you take 2 puffs of albuterol, do you mean the rescue inhaler, Albuterol Sulfate? That seems the easiest versus using Albuterol liquid that has to go in a nebulizer. Does anyone feel there may be a difference between the two in terms of positive results? Pam in Sudbury
@pamelasc1 - I used liquid levalbuterol for awhile. It caused wheezing in me so I discontinued. I have asthma in addition to bronchiectasis. Instead I use 2 puffs of albuterol 15 minutes prior to the hypersonic saline. The waiting time is the only downside I can think of. It's easy to fill that time!
@scoop - Have you noticed a difference between the two as far as getting your airways open to clear them out? The dosages are different with the nebulized version being a higher dosage so I always wondered how they could do an "equal" job?
The only difference I noticed is that I no longer have wheezing after inhaling levalbuterol. It was really a show stopper for me. With the albuterol puffer my airways seem to open nicely for airway clearance and I have not experienced any issues with them not being open enough to clear.
My Mom had pseudo. She was on Tobramyicin- ? Toby?? She acquired it in the hospital. She only had 1 1/2 lung & had chronic bronchiectasis most of her life.