Tobi

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Jshet22

New member
Hi everyone. I haven't been on here in awhile and looked at archive posts to see if I could find an answer and didn't see anything. My son is 20 with cf, autism and a ton of other things. Since September his pft's have been dropping. He had a slight increase in December, but they are down to the lowest they have ever been. Since December he has been on antibiotics for a total of 7 weeks and is starting another 2 week course bringing it up to 9 weeks. He has also had 2 bouts of DIOS in the last 2 months and this is his first time experiencing this.
his doc is wanting him to start Tobi and since it takes awhile for insurance approval, he started an oral antibiotic today. In a month he has to go for a repeat pft. He said if Tobi helps he will stay on it doing the 28 day on off course. If it doesn't they will stop it and not sure what they will try if anything. My question is, are most people with cf on Tobi as part of their prevenative therapies or is this prescribed for progression of the disease? I guess my real question is, is the reason the Tobi has been prescribed because his cf is progressing? Just trying to understand this new medication. I didn't want to ask these questions in front of my son because I am not sure how much he is paying attention or understands and do not want him to become afraid or confused and not be able to share his feelings with me.
Thank you so much.
 
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kenna2

Member
Tobi is given to battle Pseudomonas which is a common thing that is cultured in CF patients. Since this is new to him this could either be because he just started culturing it or the other meds used to treat whatever he was culturing have become resistant to one of the medications that used to work. It's natural for this to happen. Over time the over use of some meds just aren't as effective. However, my doctor has assured me that in many cases they have been able to reintroduce meds that have stopped working at one point and they've started working again because the resistance to those meds have changed. Tobi is a really good and powerful med that should do the trick. The 28 days on 28 days off is a normal preventive therapy once on it. When he is sick he can be given it via IV which is a lot stronger. While on this medication though I can't stress enough how important it is to make sure you have his hearing checked once a year. This med if given too much via IV it can cause hearing loss. I was on it for years inhaled and IV with no issues. Just make sure you stay on top of it to prevent it.
 
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Jshet22

New member
Thank you so much kenna2. I understand things better. Also thank you for the heads up on the hearing, I was not aware of this. I will be sure to keep this in mind if he continues on with this med.
they have been alternating Cipro and bactrum but it just isn't kicking it out like it use to.
 
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ethan508

New member
Like kenna2 said, 28 days on, 28 days off Tobi cycles are common for those of us that culture pseudomonas. I don't tolerate inhaled Tobi super well (hearing diminishes, I fight thrush, I feel like crap), so I use it as a more traditional boost to my immune system, going on it for 28 days when I start to feel an infection or cold start to pop up. One alternative to inhaled Tobi is inhaled Cayston. I know a few people that use it in a similar 28 days on, 28 days off cycle. I've also heard that some people might alternate doing a cycle of Tobi for a month and then switching to a cycle of Cayston for the next month.
 
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Jshet22

New member
Thank you ethan508. I was wondering how long it takes to neb the Tobi. Hoping it won't keep him tied down much longer then he already is. He does albuterol, pulmocort, hypersal and vest 2x day with pulmozyne 1x. Adding Tobi 2x is gonna be a lot for him, but will hopefully adjust quickly.
 
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Jshet22

New member
15 minutes isn't too bad. I'm sure he can handle it after he gets use to it. The hard part will actually be the 28 day on/off routine for him I'm thinking. He hates change, lol. One of the tough things with autism. I'm sure there will get lots of bribing and rewards at first. Thank you so much for sharing the great info. I greatly appreciate it.
 
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Ratatosk

Administrator
Staff member
DS has been on Tobi off and on since he was 2 or 3 months old and cultured pseudo. Cultured if off and on over the years, usually no symptoms. The two times he was symptomatic with an exacerbation he was put on cipro. He did get put on IVs once because he was already in the hospital for something else and the doctor decided to do cleanout.

Today DS is in his teens and because we've always had treatment (vest & nebs) times be the time he can do anything he wants -- video games, computer, youtube, tv ipad, etc. he doesn't mind the extra gaming time. There are times when I've had to remind him to shut down his xbox so he can come eat dinner. The extra 15 minutes is just one of those things we've gotten used to and the 28 days off aka Tobi vacation is a nice little reprieve.
 
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Michaelp397

New member
Jshet22 said:
That's exactly what I was thinking now Ratatosk. He will definetly like the extra video game time.
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Hello I've been on Tobi podhaler for a few years and I'm not crazy about it, it makes me horse but I currently do vest 3-4 times day, Toni 2, pulmozyme2, hypertonic saline 2 and every other month alternate tobi with cayston 3 times daily plus the rest of my schedule. Also albuterol and symbicort 2 times daily. I'm busy with treatments a lot during the day!!
 
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Jshet22

New member
Wow michaelp397, your treatments keep you busy. I am going to bring up the podhaler at his next appt so see what the think. He already does vest 2x, albuterol, hypersal, pulmocourt 2x and pulmozyme 1x. He also has lymphedema and spends 1 hour a day hooked up to a pump. Now adding Tobi.
How long does it take for Tobi to start working? He has a pft scheduled for the 20th and should be starting Tobi tomorrow provided it is delivered. Hoping for no side effects.
 
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