Tobi problems: FYI After Using over 10 Yrs.

[scanboyd]

I have been using Tobi every other month for over 10 yrs.. The last couple of yrs. alt. with Cayston. Started alt. Tobi every third month when I started doing neb. Colistin, Tobi, Cayston. The last three times I have used Tobi (over a six month period) end up with some adverse affects, tightness in chest, wended, more short of breath with the least bit of exercision, sats would drop and rest sats were at 93-94 normall run 96-97 resting when not on Tobi. Also had a what I would consider a shingles feeling, felt like nerve ending discomfort. I did not complete the full 28 days, only did 21 this time, swaped to Cayston. This discomfort started slowly getting better; after about 10 days off Tobi, back to my normal with all problems disappeared. Don't think I would call this a reaction but more of issues, and problems with thaking neb. Tobi. No problems with taking the Colistin.

Guess I will be alternating Cayston and Colistin and droping Tobi from my arsenal of neb. antibiotics.

 

[kosdancer]

That's really interesting - I had a similar experience though not as severe. I was also on TOBI for about 10 years and a year after Cayston was approved and I had added it to my rotation I noticed that for 3 TOBI cycles in a row I was feeling congested/short of breath/sick so I went off of TOBI. Now I rotate Colistin and Cayston and that works just fine but the reaction does seem to surprise most people. Good to know I'm not alone.