I can not tolerate TOBI (causes tightness) but a new cf doc mentioned this to me. Does the pod healer work for anyone when TOBI did not. Is it tolerated well? Cayston is the only inhaled antibiotic I take now. 2 weeks ago I started the vertex study drug for ddf508 so I think I may wait about anything else new right now but would like to know anything you can tell me about the pod haler. Thanks
Tobi pod haler
- Thread starter Emer76
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I was on the Podhaler for a while and it worked OK for me. I went off of it because I was on other antibiotics that duplicated TOBI.
One of the CF care team members at my clinic mentioned that some people have so much trouble with the Podhaler that they have to go back to nebulizer TOBI. She said that if I later need to go back on Pseudomonas therapy, she would probably recommend Cayston for me.
One of the CF care team members at my clinic mentioned that some people have so much trouble with the Podhaler that they have to go back to nebulizer TOBI. She said that if I later need to go back on Pseudomonas therapy, she would probably recommend Cayston for me.
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stephen
Guest
It’s interesting how many of us tolerate different drugs.
After using the Podhaler for less than a week, I gave it up. It appeared to cause a persistent dry cough and breathing difficulties.
Colistin appeared to cause a low grade fever in addition to the same persistent dry cough and breathing difficulties as the Podhaler. I gave that up after using it for three 28 day cycles.
Cayston, which I have been using for successfully for over six years, is the only inhaled antibiotic I seem to tolerate easily. I tried the Colistin and Podhaler just to have something else to use during the Cayston off months, but as I said neither worked out.
I had used TOBI for about three years after first being diagnosed with CF. After a few rounds of IV Tobramycin, it and the TOBI affected my hearing and I have not used either in quite a while. Fortunately, the CF center I was attending at the time was able to get me into the Cayston (or Aztreonam Lysine as it was called at the time) Extended Access Program. I was supplied with it for about three years before it got FDA approval.
Thank G-d the Cayston appears to work fine for me. If it didn’t, I would go back and try Podhaler, Colistin, or maybe the Bethkis/TOBI again. Instead of using it for the full 28 days, I would try it for two weeks. (I have spoken to my CF doctor about this.) I might also try reducing the dosage. I was advised not to reduce the daily frequency.
Many of us are fortunate to have some choices. I know more inhaled antibiotics are in development.
After using the Podhaler for less than a week, I gave it up. It appeared to cause a persistent dry cough and breathing difficulties.
Colistin appeared to cause a low grade fever in addition to the same persistent dry cough and breathing difficulties as the Podhaler. I gave that up after using it for three 28 day cycles.
Cayston, which I have been using for successfully for over six years, is the only inhaled antibiotic I seem to tolerate easily. I tried the Colistin and Podhaler just to have something else to use during the Cayston off months, but as I said neither worked out.
I had used TOBI for about three years after first being diagnosed with CF. After a few rounds of IV Tobramycin, it and the TOBI affected my hearing and I have not used either in quite a while. Fortunately, the CF center I was attending at the time was able to get me into the Cayston (or Aztreonam Lysine as it was called at the time) Extended Access Program. I was supplied with it for about three years before it got FDA approval.
Thank G-d the Cayston appears to work fine for me. If it didn’t, I would go back and try Podhaler, Colistin, or maybe the Bethkis/TOBI again. Instead of using it for the full 28 days, I would try it for two weeks. (I have spoken to my CF doctor about this.) I might also try reducing the dosage. I was advised not to reduce the daily frequency.
Many of us are fortunate to have some choices. I know more inhaled antibiotics are in development.
I couldn't tolerate nebulized Tobi, b/c of extreme tightness and voice loss. The Podhaler is great for me! I've been more well than ever since starting it in July 2013. I hate to hear so many can't use it. I did have some tickly type cough the first month, but I guess I've adjusted. I always rinse a lot after using it.
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Red9928
Guest
I also can't tolerate the Podhaler, it resulted in chest tightness, increased cough and a decline in lung function. I didn't do as poorly on nebulized Tobi, but often had extreme voice loss...got a little tired of everyone asking if I was sick, when I could barely squeak out a conversation. I switched to Cayston and am doing well on it.
I've been on Cayston for over a year now (I don't tolerate the others very well, lots of chest tightness). The last sputum analysis showed a little resistance to Aztreonam 
How come after only 1 year on it it's already a bit resistant ?! What will I do when Cayston is no longer an option ?! IVs are temporary and you need something inhaled for the months after ... TOBI, the Podhaler and Colistin are rough on my lungs (tightness) and my voice It is discouraging ...
How come after only 1 year on it it's already a bit resistant ?! What will I do when Cayston is no longer an option ?! IVs are temporary and you need something inhaled for the months after ... TOBI, the Podhaler and Colistin are rough on my lungs (tightness) and my voice It is discouraging ...
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Patti Rowland
Guest
I've been on Cayston for over a year now (I don't tolerate the others very well, lots of chest tightness). The last sputum analysis showed a little resistance to Aztreonam
When my daughter first tried the Podhaler she did not like it - by the end of the month she was just fine. It takes awhile to get the hang of it I think. She alternates Cayston with Colistin one month and the Podhaler the next. She thinks she feels better on the Podhaler months ~ plus, being a busy college student she loves the convenience of the Podhaler. I am hoping one day she will be on the Vertex drug and not need antibiotics everyday for a change!
sunshine39656
Member
I started the Tobi Podhaler yesterday. So far, so good. I do not tolerate the inhaled Tobi well at all, but needed/wanted something to alternate with the Cayston.
i love the convenience of the podhaler but i do notice some chest tightness on it. not as bad as with the traditional inhaled tobi which i absolutely cannot stand. the podhaler definitely still tastes like tobi though...and it does make me cough. i usually lose the first inhalation (you have to inhale twice on each capsule with 4 capsules total) because i immediately cough as soon as the powder hits the back of my throat. oh well. better to get most of it right? i'd say give it a shot. not sure if they are still doing it but the company that makes it was covering all copays for the first year so check to see if they are still offering that.
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stephen
Guest
My doctor advised me that when using the Podhaler, I should inhale softly and slowly, especially on the first inhalation on each capsule.
This minimizes the need to immediately cough that jaimers mentioned above. It worked for me although it may necessitate more than two inhalations to get all the powder out of a capsule.
This minimizes the need to immediately cough that jaimers mentioned above. It worked for me although it may necessitate more than two inhalations to get all the powder out of a capsule.
Thank you so much for your responses. Great info on this site. It also make me feel like there are people out there that understand and are dealing with the same things I am. I might actually try th podhaler sometime. I have to admit I' m a little nervous to try new inhaled meds because I' ve had so many issues with them. I too can only take cayston and love it but wonder how long it will work. Hopefully, New inhaled antibiotics are in the works and as someone said above there is vertex. Keep our first get a crossed. Thanks jaimers, I didn't even know there are 4 capsules and that you inhale each cap twice.
sunshine39656
Member
I started the Podhaler last week and so far, so good.