My daughter started the new TOBI podhaler last month. I was so happy about having less nebs to sterilize. However, she started having problems with blood in her sputum which is not the norm for her. We stopped using it and the blood in her sputum cleared up. Her doctors agreed the crystals you inhale may have irritated her lings. Has anyone else had this issue?
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TOBI Podhaler
- Thread starter dmarie781
- Start date
MotherofCFBoy11yrs
Member
My son tried the Podhaler for a few days but I noticed his breathing became noisy at night so he went back to nebulized Tobi. He can tolerate lots of hypertonic saline so I don't think his lungs are especially sensitive.
However I've since read (I think it was on this forum) that you are not supposed to take deep breaths when using the Podhaler. If that is the case we might try it again, it would certainly be a lot more convenient.
However I've since read (I think it was on this forum) that you are not supposed to take deep breaths when using the Podhaler. If that is the case we might try it again, it would certainly be a lot more convenient.
J
jamest
Guest
I've been taking the podhaler since it came out, so three or four doses now. I notice by the end of the month my lungs are tight and I am coughing a lot more. I think the podhaler is causing irritation. I wouldn't be surprised if it was causing bleeding as well, irritation and bleeding go hand in hand for me.
I've been taking nebbed tobi since like 2001... I'm not sure I could go back, even with the irritation, the podhaler just saves so much time!
I've been taking nebbed tobi since like 2001... I'm not sure I could go back, even with the irritation, the podhaler just saves so much time!
momofcfprincess
New member
My daughter had to stop because it made her so tight and cough. We took her to doctor and lung function was down to 34% and blood oxygen levels were 86% . Her blood oxygen has never been that low and this is the first time she's ever needed oxygen. Don't know if it was because of tobi ph or just because she was having a cf flare up.all I know is when she started the Tobi pod her lung function was 51% three weeks later 34%. Either way we are going back to nebulized Tobi.
MotherofCFBoy11yrs
Member
I found the posting about the Podhaler: the person says that she had been taking the capsules with fast deep breaths which is wrong, the correct way is to take each capsule with *two slow breaths*. Apparently the instructions are not clear about this, she had got the information from the company rep. The Podhaler must have gone through a lot of testing so I would assume it is safe if used correctly.
chelsie882003
New member
I was on the Tobi Podhaler 2 months ago, it lowered my pfts, and my chest was so tight from it and I was coughing a lot, and then I started to run fevers. so I decided to change to the tobi inhaled. and it doesn't give me any problems
A
Allansarmy
Guest
My son tried the Podhaler for a few days but I noticed his breathing became noisy at night so he went back to nebulized Tobi. He can tolerate lots of hypertonic saline so I don't think his lungs are especially sensitive.
However I've since read (I think it was on this forum) that you are not supposed to take deep breaths when using the Podhaler. If that is the case we might try it again, it would certainly be a lot more convenient.
Heard same thing to not take a huge deep breath like an inhaler, but more of a slow deep breath. Correct me if I am wrong. Also, you might need to take weather into consideration here. It is extremely dry in most peoples homes and the cold air outside doesn't help. So I would hate to see you give up the podhaler forever. Maybe try it again in the Spring?
Question for those of you that got sick off of this - were you able to recover without any extra drugs? Or did you have to take something else or get hospitalized? I just did almost 3 weeks of it and had to stop because I felt like crap, and I've been off it for about 5 days and don't really feel much better - just want to get an idea of how worried I need to be! Thanks.
S
stephen
Guest
My doctor gave me a seven day trial pack of the TOBI Podhaler. He warned me not to inhale quickly when using it - especially on the first breath with each capsule.
I had planned to use it for about two weeks during the off months from Cayston. I had stopped using liquid TOBI years ago because of hearing problems - and the Cayston was doing a good job.
After using the TOBI Podhaler for six days I stopped it. It seemed to be causing a dry cough, increased ringing in my ears, and a general poor feeling. The symptoms went away within a few days after stopping it. (I had also tried using nebulized Colistin in the Cayston off months but gave this up too.)
After over six years of Cayston, it still seems to be doing a fairly good job, thank G-d. As long as it continues to do so, I'll stay away form the TOBI and Colistin. If and when the Cayston becomes less effective, I probably will give the TOBI Podhaler another try; again not for the full month.
I had planned to use it for about two weeks during the off months from Cayston. I had stopped using liquid TOBI years ago because of hearing problems - and the Cayston was doing a good job.
After using the TOBI Podhaler for six days I stopped it. It seemed to be causing a dry cough, increased ringing in my ears, and a general poor feeling. The symptoms went away within a few days after stopping it. (I had also tried using nebulized Colistin in the Cayston off months but gave this up too.)
After over six years of Cayston, it still seems to be doing a fairly good job, thank G-d. As long as it continues to do so, I'll stay away form the TOBI and Colistin. If and when the Cayston becomes less effective, I probably will give the TOBI Podhaler another try; again not for the full month.