Just wondering what treatments others do to keep the pseudomonas "under control". I am new at this and my doc is recommending zithromax 3x/week and inhaled colistin either every other month or every three months (it has decided yet). I also take prednisone 30 mg. every other day.
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maintenance treatments for pseudomonas
- Thread starter anonymous
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Emily65Roses
New member
Zithromax 3x a week, Pulmozyme every day. Uhh... airway clearance. I think that's it?
Jeremy's anti-pa treatments are:
Zithromax 1x daily.
Colistmethate, for one month when needed.
He was previously doing the tobi/coly monthly dosing and alternation, but he started to get ringing in the ears during the tobi months. So, about September last ear he stopped doing Tobi months, and alternating nothing/coly. About December, he decided to try going without coly as well. Why risk becoming more resistant? The doc gave his blessing with a few conditions. One, two vest/neb treatments daily (mucomyst, albuterol, and atrovent - which he always does), plus daily exercise (which we try to do most days). Two, when he needs it, he will do inhaled antibiotics.
It has worked out well so far. His PFTs have been stable. He felt kind of "eh" last doctor's visit, plus he was hacking up squicky greenish mucus (instead of the 'normal' yellow). So, he got orders for a month of coly. After that, he's been less "congested" feeling, so I take that as a good sign. We've also added hypertonic saline (5%) for airway clearance, and so far, it's been really helpful.
Why are you taking the prednisone?
-Michelle (girlfriend to Jeremy, 28/cf)
Zithromax 1x daily.
Colistmethate, for one month when needed.
He was previously doing the tobi/coly monthly dosing and alternation, but he started to get ringing in the ears during the tobi months. So, about September last ear he stopped doing Tobi months, and alternating nothing/coly. About December, he decided to try going without coly as well. Why risk becoming more resistant? The doc gave his blessing with a few conditions. One, two vest/neb treatments daily (mucomyst, albuterol, and atrovent - which he always does), plus daily exercise (which we try to do most days). Two, when he needs it, he will do inhaled antibiotics.
It has worked out well so far. His PFTs have been stable. He felt kind of "eh" last doctor's visit, plus he was hacking up squicky greenish mucus (instead of the 'normal' yellow). So, he got orders for a month of coly. After that, he's been less "congested" feeling, so I take that as a good sign. We've also added hypertonic saline (5%) for airway clearance, and so far, it's been really helpful.
Why are you taking the prednisone?
-Michelle (girlfriend to Jeremy, 28/cf)
Emily65Roses
New member
For me, yes. I don't know if it's working anymore, because I haven't gone off of it in almost 3 years... it may well still be doing a good job, or it may be doing nothing. I have no way of knowing unless I stop taking it for a while. But when I first started taking it... yes.
for me i think pulmozyme was one of the best things. since then i can cough up the mucus much more easier and it doesn`t stick down there like before...its better...and my PFT have been on the same level for two years...i think it really depends a lot on how you do it...like doing sports, eating, making the therapy...without that i would have never managed to keep at the same level...
it`s just really exhausting sometimes...since i go to university and live on my own...phew...like when it starts in the morning i always must get up much earlier and so when i get there i`m sometimes quite tired and people don´t understand why...that`s hard...
lisa, 20, cf
it`s just really exhausting sometimes...since i go to university and live on my own...phew...like when it starts in the morning i always must get up much earlier and so when i get there i`m sometimes quite tired and people don´t understand why...that`s hard...
lisa, 20, cf