TOBI/TOBI Podhaler

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RayRDT

New member
Hello,

I'm new to the forum :) Female and 41 yo.

I had to stop the TOBI Podhaler after 2½ months, because it seemed I wasn't tolerating it at all. I just started the regular TOBI (300 mg) and it seems after !one day! that I am not tolerating it either !!! I have tightness in my lungs and I'm wheezing quite a bit. Couldn't sleep because of it :(

TOBI is pretty much the best antibio for PA and for crying out loud, it seems I can't tolerate it !!! I am utterly depressed today :(

Note : I got PA in my lungs for the first time in December last year (mucoid form). Started first with Tobramycin (inhaling IV form, 80 mg), then the Podhaler instead, then added Coly-Mycin, and now TOBI/Coly. Coly-Mycin works very well but I need something for the alternate months ...

A couple of weeks ago, on Facebook, I saw a post from a friend of a friend and she mentionned that in her clinic, they have seen recently quite a few people who are not able to tolerate TOBI ... Has anybody heard of this ???

Feeling extremely & utterly sorry for myself today :((( I mean for crying out loud, the best med for PA is TOBI and I do not tolerate it !!!

RDT.
 
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triples15

Super Moderator
Hi and welcome Ray! I'm sorry you are so depressed!

I have the same reaction to Tobi. Tightness, wheezing, SOB, the whole nine. At first it would take me a few days or a week of my Tobi cycle to start feeling it and I'd still muscle through the 28 days feeling like crap all the while. It eventually got to the point that after just a dose or two I became so short of breath that I had to stop all together. Very unfortunately for me I have the same reaction, except even more immediate and severe to Colistin. My reaction to Colistin is so severe that it has been deemed an allergy. I have cultured pseudo for as long as I can remember so it is really sucky to have both Tobi and Colistin out of my arsenal. I have not used either for 2+ years. I have had a lot of luck with Cayston though as it is also very effective against PA. Have you tried it yet? Perhaps you could alternate Coly and Cayston.

I have "met" a few others who have the same problem with Tobi. I think unfortunately it does cause bronchospasms for quite a few of us. :( My suggestion would be to talk to your doc about Cayston. It could be a viable option for you!

Good luck to you and take care!

Autumn 32 w/CF
 
R

RayRDT

New member
That's what my respirologist suggested last time, Cayston + Coly.

Thxs, RDT.


triples15 said:
Hi and welcome Ray! I'm sorry you are so depressed!

I have the same reaction to Tobi. Tightness, wheezing, SOB, the whole nine. At first it would take me a few days or a week of my Tobi cycle to start feeling it and I'd still muscle through the 28 days feeling like crap all the while. It eventually got to the point that after just a dose or two I became so short of breath that I had to stop all together. Very unfortunately for me I have the same reaction, except even more immediate and severe to Colistin. My reaction to Colistin is so severe that it has been deemed an allergy. I have cultured pseudo for as long as I can remember so it is really sucky to have both Tobi and Colistin out of my arsenal. I have not used either for 2+ years. I have had a lot of luck with Cayston though as it is also very effective against PA. Have you tried it yet? Perhaps you could alternate Coly and Cayston.

I have "met" a few others who have the same problem with Tobi. I think unfortunately it does cause bronchospasms for quite a few of us. :( My suggestion would be to talk to your doc about Cayston. It could be a viable option for you!

Good luck to you and take care!

Autumn 32 w/CF
Click to expand...
 
M

mattemo

New member
I'm on TOBI every other month, and it almost always makes me feel crappy - shortness of breath, headache, congestion, etc. I always just tough it out, but I was actually just wondering if it would be better to not use it?
 
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bigstar

New member
Ask your doctor about Bramitob, it is a generic medicine of Tobi. Same thing but it works differenlty for me. Its less thick, more easily tolerated, shorter treatments.
Cayston is also available!
 
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greatbay

New member
I was put on Tobi via Nebs and after coughing through 3 treatments...my pulmonologist decided to watch me take my 4th treatment to make sure I was doing it right....3 minutes into treatment and coughing so bad my face turned blue...he shut down treatment and said, "it is evident that you can not tolerate Tobi." Glad he finally agreed but my complaint is....why didn't he believe me when I told him my reaction to Tobi..??
 
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RayRDT

New member
I officially stopped TOBI. My lungs were awful on it (asthma like symptoms : wheezing/tightness(bronchospam), phlegm, etc.) ! I went back to my buddy Coly-Mycin ;-) My doc will see me in a week and we will discuss Cayston. It seems that with TOBI the side effects strongly outwayed the beneficial portion. PA took over and now I have to add Cipro to Coly because it seems I have a relapse :(


When oh when will I have a break :(

RDT.
 
D

danie

Guest
I had the same reaction on the Tobi podhaler and also on Tobi. I tried the podhaler for 4 days, but shortness of breasth so extreme that I had to stop. Now back on colistin. And that works perfect. No issue at all. I tried the podhaler for convenience reasons. I think colistin might be an option for you? PA resistence to colistin is hardly an issue, it is with tobi (that's why it's adviced 4 wks on, 4 wks off). And since you might need tobi IV at some point, it might make sense to go with colistin for inhalation. Good luck
Louise, 45 w/cf
 
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LookingforPeace

New member
I started tobi about 6 weeks ago. I've experienced SOME (1/day) wheezing. I was told to up my ventolin and Flovent and this seems to have worked. I also noticed I have lost energy, I have been less able to walk quickly etc, I also have excruciating back, bum, and leg pain. I am waiting for further info from my clinic.
 
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bigstar

New member
greatbay Ι had to do the same with my doc too. She prescribed Aerolin inhaler before Bramitob. She agreed its hard for me to tolerate and its causing me a lot of cough but i need to stay on it. So we tried to monitor if there is any side affects between tobramycin and Budesonide/formoterol i usually use before. Seemed that they had a conflict

 RayRDT I think Bramitob is imported from Italy. Take a shot asking your doctor. It helped me a lot because it doesnt give me a hoarse voice.





 
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RayRDT

New member
I am on Coly-Mycin and it works very well. The doc does not want me on it continously because of resistance (I know it's harder with this antibio to get resistance, I wonder if anybody is resistant to Coly?). I will ask my doc if we have Bramitob.
 
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rtorres25

Member
I can't tolerate Tobi neb or IV. I get severe asthma symptoms. Feels like an elephant is sitting on my chest. I feel totally deprived, too. Cayston is my only option for inhaled antibiotics. Glad I'm tolerating it well.
 
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bigstar

New member
Guys dont forget that Colobreath (colistin in a powder inhaler) is available in some places like the UK and soon in others as well. So dont get frustrated if you cant tolerate something. We now have a lot of meds in our arsenal! (cayston, TIP/Tobi/bramitob, colobreath) I hope inhaled Cipro is out soon.
 
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