Tobi Pod-haler! How to use Tobi pod-haler and personal experience

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momofcfprincess

New member
Hi!!! Here is a video showing how to use the tobi-podhaler (tobramycin inhalation powder) and personal tips! Just Thought maybe a few curious cfer's wanted to know how it works ;)Hope you Enjoy

 
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Jellybaby

New member
Loved Tobi podhaler but unfortunately it made me very tight towards the end of the month so iv switched back to nebulised Tobi! :(
 
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Mrkdale

Guest
I just started using this last week. A bit wierd but it certainly is convenient and fast. Seems to be just as effective as the nebulized version. Would be curious to hear others thoughts and results.
 
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kristenj

New member
I just had the most miserable experience with Tobi Podhaler! I felt so horrible on it and I tried to continue because I thought it was just side effects but my lung functions have dropped 11% in one month after using it and the effects still haven't worn off like my doctor thought they would after several weeks and tons of other antibiotics. I am quite frankly terrified that I have lost this function and it has not come back. I have never experienced this sudden of a drop in my 40 years of life with CF. I was previously at 77% in May after completing a course of Bactrim and Cayston. Then I got shingles (which I wouldn't wish on my worst enemy) and that bumped me down to 73%. They then started me on Tobi Podhaler and I continued the Bactrim. After three weeks of Tobi, I couldn't take it anymore I was so miserable. The tightness in my chest was RIDICULOUS and I was unable to take a deep breath and my functions dropped to 62%. No one taught me how to do the Tobi Podhaler, I just read cover to cover the instructions to make sure I was doing it right. The Tobi rep happened to be in clinic the day I called my nurse and the Tobi rep reported that you are supposed to take two SLOW breaths per capsules. I was breathing in WAY TOO DEEP and WAY TO FAST, but again, no one told me this AND IT IS NOT IN THE LITERATURE. I CANNOT EXPRESS TO YOU MY FURY THAT TOBI HAS THIS KNOWLEDGE BUT HAS NOT STATED IT IN THE LITERATURE!!! MY CF NURSE DIDN'T EVEN KNOW THIS!!! I went back and re-read the literature to make sure I didn't just miss it. I AM SO ABSOLUTELY RAGING AND I MAY HAVE PERMANENTLY LOST LUNG FUNCTION DUE TO THIS ISSUE!!! PLEASE PLEASE PLEASE make sure you are administering it properly as they have not included the proper instructions in the manual and my clinic wasn't even aware of this.Fnctions have come up a tiny bit to 67% after more rounds of Bactrim but my lungs were unresponsive to IV therapy. I think it is because the Tobi completely screwed me up. I am so upset, I cannot even express that something that was supposed to help me completely screwed me up.
 
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momofcfprincess

New member
My daughter who made the video just had to stop the Tobi pod healer because she was coughing to much and making her chest tight. Will talk to her doctor to see if she should continue or not.
 
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kristenj

New member
I am so sorry to hear that she is experiencing this as well. The doctors told me that the effects should have worn off by now. All I know is that I haven't been the same since I was on it. I am glad you pulled her off it right away! I stayed on it for way too long trying to deal with what I thought were simple side effects, not actual loss of lung function. I would be curious to know what your doctors say about it. And in the meantime, I will pray that there is no lasting damage to your beautiful daughter's lungs:)! Take care!
 
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NancyRN36

New member
This is the first time I've ever heard of the TOBI pod-haler. Both my children were diagnosed in 2005--DF508. My Daughter is on inhaled TOBI every other month. It has been a struggle, trying to get to shcool on time...seems easier, but not what is best for lung function....
To the young lady who made this video....GREAT JOB! Thank you for being a role model for others with CF!
 
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keefer11

New member
How soon after you all stopped using the Tobi Podhaler did the tightness in your chest go away? I had some tightness before I started and it seems to be getting worse on it and I'm debating stopping it. Thanks!
 
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jamest

Guest
I alternate between cayston and the podhaler, I love it. Super easy to use and much faster than the nebulized tobi.

I don't get any tightness and I certainly haven't noticed a decrease in lung function - if anything, I feel better than ever. Big thumbs up from me.

My voice did get hoarse the first month I used it, but that has gone away. Also, I have ringing in my ears; I've been doing tobi since early 2000s so this is not unexpected. Both side effects are a small price to pay, from my perspective.
 
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kristenj

New member
Hi keefer 11, sorry it took so long for me to respond...I went on the tobi pod haler at the beginning of July. I still have not gotten my full lung function back and the tightness I think is getting better but it has been very slow. I will retest on Friday and let you know how it goes. Hope you are doing better also!!!!
 
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momofcfprincess

New member
My daughter is the one who posted the video, she 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.
 
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kristenj

New member
Mom of cf princess, I am so sorry to hear this news!!!! I can tell you that I do think I am improving some in terms of the tightness in my chest and the feeling of not being able to take a deep breath as if there is a band around my chest. I too was on the tobi podhaler for three weeks until I just couldn't take it anymore as I posted earlier. I came off the tobi around July 20th or so and they moved me to cipro which I think did its own damage as one of the side effects can affect the elasticity in your body so the tightening worsened. When they realized that didn't do anything, they put me on two weeks of IV therapy. I went from 62% to 67% but that wasn't really the change they were looking for (although I am grateful for every percentage I can improve). I truly believe what I experienced is side effects as I have never in my 40 years felt anything like this until being on that stupid podhaler followed by cipro. Following all of this treatment, the Dr realized that the antibiotics weren't working, so they did a 5 day 40mg prednisone pulse treatment two weeks ago to see if that would open up my airways. So the good news is that last week, I started to see some improvement in how I was feeling. I still have some days where I feel tight in the chest and like I can't inhale all of the way, but I am seeing improvement slowly. I am trying to really flush my system out(in the event that these symptoms and loss of function are due to these meds)and I am drinking 3 liters of water a day (or trying anyway), usually I get in at least 2+ and I am exercising as much as possible to try and flush these drugs out. I am also doing fruit and veggie smoothies with kale and probiotics to clean out my gut and replace all of the healthy bacteria. I retest on Friday and will let you know how it goes, but I want to encourage you that I am seeing improvement even though it feels very slow. I pray that your daughter will see improvement also. It is so scary any time we lose any function! Praying for you all!!!
 
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occupyjapan

New member
momofcfprincess said:
My daughter is the one who posted the video, she 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.
Click to expand...

That is terrible and I feel so awful for your daughter, but with all due respect, I think your daughter's initial lung function was too low for the podhaler to be used effectively. My doctor told me that you have to be at atleast 60 or 65% (I forget which, but definitely in the 60's) for you to have the ability to inhale it effectively. Mine is in the upper 80's (trying to shoot for 90 or so next visit!) and he's asked me if I'd like to switch to the podhaler, but I'm perfectly happy using the Trio. I switched to it a couple months ago. Using a regular air compressor with Tobi was making me feel awful, taking forever and lead to terrible bronchospasms the entire month I'd be on it. The Trio fixed all of that. Wayyyyy faster, far less severe bronchospasms and I actually feel GOOD from Tobi again. In fact, at my most recent doctor's appointment, I'm no longer even culturing PA, just MRSA and normal respiratory flora. First PA-free culture since age 15 (I am 29 now).

If your daughter's initial lung functions were 51%, it may well be that she wasn't inhaling the medicine into her small airways, meaning they were effectively not getting an antibiotic treatment (or at least the required antimicrobial dose). This could have lead to an exacerbation.
 
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