Doe anyone take tobi and cayston (or other inhaled antibiotics) on 2 week cycles or 1 week cycles? I am wondering if this will hinder the effectiveness of the drugs? Tobi (although keeping my hospital stays down) is literally making me so miserable I am ready to throw in the towel. I have no quality of life when I cough more with it then when I am having the worst flare up. I would rather be permanently attached to iv drugs. Desperately searching for an alternative to my months on tobi. Thanks for any help.
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Inhaled antibiotics
- Thread starter Jeana
- Start date
Hey Jenna,
Sorry you are so miserable <img src="i/expressions/face-icon-small-sad.gif" border="0"> Have you discussed your feelings w/ your drs ? Maybe they can come up with an alternative for you.
I have been on the same oral abx (clarithromycin) & inhaled abx (Amikasin) for over 3 yrs straight due to Mycobacterium Abcessus ..
The Amikasin doesn't make me miserable but take pretty long to nebulize. I have resigned myself to the fact that this is the way it is for me (the long nebbing time drove me crazy) so now I am ok w/ it. I will be on these 2 meds indefinitely as part of my daily meds.
Hopefully your drs will be able to work something out for you soon. Keep us posted <3 joni
Sorry you are so miserable <img src="i/expressions/face-icon-small-sad.gif" border="0"> Have you discussed your feelings w/ your drs ? Maybe they can come up with an alternative for you.
I have been on the same oral abx (clarithromycin) & inhaled abx (Amikasin) for over 3 yrs straight due to Mycobacterium Abcessus ..
The Amikasin doesn't make me miserable but take pretty long to nebulize. I have resigned myself to the fact that this is the way it is for me (the long nebbing time drove me crazy) so now I am ok w/ it. I will be on these 2 meds indefinitely as part of my daily meds.
Hopefully your drs will be able to work something out for you soon. Keep us posted <3 joni
rubyroselee
New member
Have you tried alternating Cayston with Colistin? I am unable to tolerate Colistin, so I alternate between Cayston and Tobramycin, but some people are able to alternate with different meds. Hopefully you can find a combo that works good for you. Some meds make you feel worse than better, so those aren't the best ones to use.