Resistance & Inhaled meds, ie tobi, inhaled cephtaz

[anonymous]

Hi,

I was wondering if anyone is on inhaled medications like tobi or cephtaz ALL the time, not one month on, one month off. If you are, do you worry about resistance? Inhaled Tobi never worked for me, so I was never on it. However, on Oct 1 I started inhaled cephtaz for my b. cepacia and it sas been SO WONDERFUL. I dont get short of breath in the morning anymore, I clear so much stuff during both my treatments and dont have to cough all the rest of the day normally. My O2 sats have gone up to like 97, 98 during the day, and yesterday my PFT's were 48% FEV1, which is GREAT for me (in august during a cleanout i dipped down to 30%..and things have not been going well)

Basically, it is a like a wonder drug for me the past few months just in the overall way that I feel, and with the transplant talk having been started, I am more determined than ever to stay up in the high 40's...

Basically, yesterday was my last dose (end of Nov.) I decided to go in and do the PFT's to see how they were at the end of 2 months and feeling so great. My doctor suggested I go off of it, and when I see her next week, we can see how I am doing after being off of it a week. Well it has been one day and, just as I suspected, I am feeling not as good. I havent been able to clear stuff the way that I was, despite chest pt, and feel open like I was feeling, and I can just see this next month being the same old story, I can just "tell".

It is obviously a question of resistance...I would stay on it forever if resistance werent an issue. However, have any of you experienced becoming resistant to INHALED meds. It is supposedly just as possible as with IV or oral meds, but I was curious. Have any of you become resistant to Tobi..or cephtaz ( i know probably not that many people are on inhaled cephtaz). Of course with cepacia I am concerned about resistance but I am also concerned about the quality of my life! There are two sides to it....keep taking it and risk becoming resistant and having to stop anyway, or stopping taking it and possibly getting sick again and end up in the hospital on IV's anyway. AH, i am rambling but its like being between a rock and a hard place...

In the end I think I am going to see if after this week, I can go back on it, at least for the month of december. I want to feel good for the holidays!?

Ok, sorry to go on. but, have any of you become resistant to inhaled meds? if so, have you become sensitive again? and, are any of you on them 24/7?

thanks so much for reading all this!

Caitlin

 

[Emeraldmirror]

I was tobi resistant back in.... 2000.. when i was 16, i ended up in the hospital and actually killed it off... now i don't believe i grow the resistant bacteria anymore.. because for one i don't hear about it anymore and for seconds.. i'm still on tobi.. i have been on tobi since i was... like 7 or something.. never on and off.. just on it all the time... (inhailed) other than that one time i haven't had any other problems..

Ashley 21 w/cf

 

[Faust]

Yes resistance to inhaled meds are just as likely, and probably more so than IV meds. (when I say meds, I mean antibiotics). Most people only go through IV meds when they have an asacerbation and require deep care. While those on aerosol meds are either on a "One month on, one month off" approach. Tobi seemed to work good for me, for a while anyways. But then after a year or two I had a tobramicym resistant strain. Gues what all other cystics on the same regimen, with the same amount of time had? That's right, a tobramicyn resistant strain. It really isn't rocket science, antibiotics, regardless if it's via an IV or an aerosol, if you introduce them into an environment where it warm, wet, and they are already the prominent host, and they can hide everywhere...You are going to have survivors, who in turn make resistant offspring. Doctors know it, I know it, you know it, everyone knows it. While the idea of praphalactic antibiotics sounds nice, it only gets you maybe another year or two of decent health, and then out of nowhere you have totally resistant strains. This to me is why doctors are morons. They have all this wonderful knowlege, and wonderful availability to look into other avenues, but they 100% abide by what they were taight, and that no other avenues are proper. They overall remind me of brainwashed shamans. So sad.


Sorry you are dealing with this man, but doctors won't save you, most of them suck.

 

[Marjolein]

I'm not on Tobi cause my peds doc was very hesitant about that years ago cause i was allready resistant to a lot of ab's and Tobra IV was working well for me. She didn't want to give me Tobi with the fear that my iv's wouldn't work anymore.
But i don't think you can say that from all inhaled ab's, i'm on inhaled Colistin for as long as i can remember, all the time, so not one month on one off. And Colistin is still good for me. In fact it's with Tobra the only thing that comes out of the cultures now.

 

[luke]

Caitlin,

I am very glad to hear the new medicine is working, that is great to hear. Yes, resistance is a concern to doctors but they must way the pro of decreasing infection and inflammation with the con of resistance to the drug. Since the best way to slow our disease down is by decreasing the amount of infection/inflammation then inhaled antibiotics is one of the best ways to accomplish that. But that concern is one of the reasons that Tobi is given for an entire month is to help decrease the chance of resistance.


As for sean.....I really can't get where you are coming from. Normally when someone shares a great success story like this the appropriate way to respond isn't by slamming the medical establishment that has aided in that. I am aware from your posts you like "herbal" cures. But make no mistake about it that without medical advancements like inhaled antibiotics our life expectancy would be right back to 13 years circa 1975 when I was born


Luke

 

[JazzysMom]

This year I was put on alternating Tobi & Colistin via neb. Previously I alternated Tobi neb & oral Bactrim. I feel a lot better on the Colistin, but my doctor does not want me to put on it 24/7 365 for possible resistance purposes. She much rather ad an oral antibiotic to my months of Tobi then have me become resistant to Colistin. I was put on Colistin because my new strain of pseudomonas is resistant to Tobra/Tobi. When I first started using aeresol antibiotics I thought you couldnt become immune to it because it doesnt go into your blood stream directly like oral/iv's do. Not even thinking that the bug which you are trying to kill still can.

 

[anonymous]

thanks for everyone's responses (more are still welcome)
Yeah, its amazing the difference I am feeling not being on the Cephtaz...it sucks. One of the things though is that cephtaz is not really used for me as an IV drug, (such as tobra something which i rely on heavily). I feel like if I continue to be off the cephtaz like this for the whole month of september, I might end up needing IV antibiotics which would be even worse.

I am writing an email to my dr. now, telling her all this and suggesting i go back on it, even before the appt. next week.

its interesting that I (knock on wood) havent developed resistances to drugs very easily. (knock on lots of lots of wood). Oral meds I have been on constantly my whole life. As a kid and teenager i was on bactrim pretty much all the time and didn't become resistant. Other drugs too, still work for me. Who knows what makes a person different in that respect.

Sean thanks for your trying to help but I am sorry you feel so angry about your doctors...yeah of course I can see their shortsightedness sometimes, and I have done a lot of research on my own about things; but i LIKE my doctor, if I didnt i wouldnt see her. And my hospital has done a lot for me. Besides, I dont know where you think that the resistance from inhaled meds is MORE likely than other drugs...I was under the impression that the risk was the same and just totally depended on how your body reacted. My understanding was that the one month on one month off approach was to prevent this.

Anyway, the reason I had to ask was b/c there is virtually no information on inhaled cephtaz on the internet, since it is basically a made-up thing (you just inhale the IV solution). When i type it into google i actually get a post that I wrote in 2003 before I had ever been on it, asking it people had tried it, haha.
thanks for your help

caitlin

 

[anonymous]

sorry, i meant to write "december" where i wrote september. december is particularly a month where i want to feel good what with the holidays...