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TOBI causing Brochospasms and PFT decline
Jul 28, 2010 at 5:36 PM

I was wondering if anyone else was on TOBI on28 days and off 28 days  and it caused Brochospasms with PFT decline.   Our Whitney who is 7 would be fine and then after starting the TOBI she would start coughing. We thought it was that the anitbotic was working the infection out but, after a while we kept complaining and the docter finally said that it could be the TOBI causing the problem and sure enough her PFT's kept falling after using the TOBI. Whitney was being placed in the hospital every 3 months, now we changed several things one of which was not taking the TOBI and she has not been in the hospital since June 2009, the longest she has ever gone and her PFT's was 127 the best it has every been.  The other things that we changed was the Vest system that we used, from the Smart Vest to the Hill Rom Vest.  She learned how to do the huff coughs and we do these in between each modes of the chest therapy (3 huffs and then a cough).  Also, at the first sign of a cough (no cough is her baseline) we increase therapy from 2 to 3-4 depending on symptoms.  Last thing was she has learned how to use a PEP device and works really good for school.  I really strongly believe in the PEP device and the huffing is a must.  Anyone else ever had this problem with TOBI.

Answers
I have to ditto everyone who says they cannot tolerate TOBI. My reaction started from the first time I took it - I lost my voice within a day, and starting coughing non-stop, in bronchospasm form. I would cough all day and all night - thus not really sleeping. I went ahead and did it for the 28 days to see if it would get better, and while my voice got a little better, the coughing continued. I did 28 days off and then started another cycle - which my doctor had me stop 3 days into because of how I was reacting.

I've never had IV tobramycin, so they don't know if I have a full blown allergy to it or just a reaction to the way TOBI is formulated. There's an inhaled TOBI powder being studied right now, so I will likely try that at some point to see if I can tolerate it.
Aug 02, 2010 at 6:34 AM • Reply