• Profile photo of jaimersjaimers
    Moderator
    #171204864369

    i had major problems with colistin–namely it made me worse instead of better with shortness of breath, horrible coughing, decreased fev1 etc.
    i really wanted to do it instead of Tobi b/c i hate tobi but sadly that did not work out.

    have you tried getting the tobramycin for the eflow? thats what i do now on the month on/month off cycle and its WAY better than the Tobi in my opinion b/c its faster. i know all clinics don’t necessarily think its a good idea but i wouldn’t go back to regular tobi unless absolutely forced to!

    Profile photo of jaimersjaimers
    Moderator
    #171205001663

    i had major problems with colistin–namely it made me worse instead of better with shortness of breath, horrible coughing, decreased fev1 etc.
    i really wanted to do it instead of Tobi b/c i hate tobi but sadly that did not work out.

    have you tried getting the tobramycin for the eflow? thats what i do now on the month on/month off cycle and its WAY better than the Tobi in my opinion b/c its faster. i know all clinics don’t necessarily think its a good idea but i wouldn’t go back to regular tobi unless absolutely forced to!

    Profile photo of jaimersjaimers
    Moderator
    #171205098459

    i had major problems with colistin–namely it made me worse instead of better with shortness of breath, horrible coughing, decreased fev1 etc.
    i really wanted to do it instead of Tobi b/c i hate tobi but sadly that did not work out.

    have you tried getting the tobramycin for the eflow? thats what i do now on the month on/month off cycle and its WAY better than the Tobi in my opinion b/c its faster. i know all clinics don’t necessarily think its a good idea but i wouldn’t go back to regular tobi unless absolutely forced to!

    Profile photo of jaimersjaimers
    Moderator
    #171205234542

    i had major problems with colistin–namely it made me worse instead of better with shortness of breath, horrible coughing, decreased fev1 etc.
    i really wanted to do it instead of Tobi b/c i hate tobi but sadly that did not work out.

    have you tried getting the tobramycin for the eflow? thats what i do now on the month on/month off cycle and its WAY better than the Tobi in my opinion b/c its faster. i know all clinics don’t necessarily think its a good idea but i wouldn’t go back to regular tobi unless absolutely forced to!

    Profile photo of jaimersjaimers
    Moderator
    #171205365877

    i had major problems with colistin–namely it made me worse instead of better with shortness of breath, horrible coughing, decreased fev1 etc.

    i really wanted to do it instead of Tobi b/c i hate tobi but sadly that did not work out.

    have you tried getting the tobramycin for the eflow? thats what i do now on the month on/month off cycle and its WAY better than the Tobi in my opinion b/c its faster. i know all clinics don’t necessarily think its a good idea but i wouldn’t go back to regular tobi unless absolutely forced to!

    Profile photo of MOME2RTMOME2RT
    Member
    #171204864368

    Colistin is waaaay faster! Im still trying to get Reeces clinic to switch to the Tobra that can go into the e flow.
    Tobi makes Reece hoarse. It does seem to be a little bit better then Colistin as far as keeping bugs away.

    Profile photo of MOME2RTMOME2RT
    Member
    #171205001662

    Colistin is waaaay faster! Im still trying to get Reeces clinic to switch to the Tobra that can go into the e flow.
    Tobi makes Reece hoarse. It does seem to be a little bit better then Colistin as far as keeping bugs away.

    Profile photo of MOME2RTMOME2RT
    Member
    #171205098458

    Colistin is waaaay faster! Im still trying to get Reeces clinic to switch to the Tobra that can go into the e flow.
    Tobi makes Reece hoarse. It does seem to be a little bit better then Colistin as far as keeping bugs away.

    Profile photo of MOME2RTMOME2RT
    Member
    #171205234541

    Colistin is waaaay faster! Im still trying to get Reeces clinic to switch to the Tobra that can go into the e flow.
    Tobi makes Reece hoarse. It does seem to be a little bit better then Colistin as far as keeping bugs away.

    Profile photo of MOME2RTMOME2RT
    Member
    #171205365876

    Colistin is waaaay faster! Im still trying to get Reeces clinic to switch to the Tobra that can go into the e flow.

    Tobi makes Reece hoarse. It does seem to be a little bit better then Colistin as far as keeping bugs away.

    Profile photo of MarjoleinMarjolein
    Member
    #171204864367

    I have only ever nebbed Colistin.

    I already nebbed that before TOBI existed and when it did my doctor thought it best not to neb it.
    This is because my cultures showed me sensitive to only a few antibiotics. Tobramycine, Ceftazidime and Colimycine.

    With flare-ups I always got Tobra/Cefta and and was always nebbing Colistin. Colistin was known for the fact that you don’t get resistent to it very easily when nebbing so you can neb it for years and years and years. However with TOBI my doctor was afraid I would become resistent to that with the result that we didn’t have my IV combo at hand anymore, with the flare-up.

    Colistin does foam. Be sure when you mix it not to shake the vial but sort of twist it and don’t put the saline with the powder with too much force. You can also make it in advance, before nebbing Pulmozyme, HS, Albuterol or whatever or just a little before you want to do your nebbing

    Profile photo of MarjoleinMarjolein
    Member
    #171205001661

    I have only ever nebbed Colistin.

    I already nebbed that before TOBI existed and when it did my doctor thought it best not to neb it.
    This is because my cultures showed me sensitive to only a few antibiotics. Tobramycine, Ceftazidime and Colimycine.

    With flare-ups I always got Tobra/Cefta and and was always nebbing Colistin. Colistin was known for the fact that you don’t get resistent to it very easily when nebbing so you can neb it for years and years and years. However with TOBI my doctor was afraid I would become resistent to that with the result that we didn’t have my IV combo at hand anymore, with the flare-up.

    Colistin does foam. Be sure when you mix it not to shake the vial but sort of twist it and don’t put the saline with the powder with too much force. You can also make it in advance, before nebbing Pulmozyme, HS, Albuterol or whatever or just a little before you want to do your nebbing

    Profile photo of MarjoleinMarjolein
    Member
    #171205098457

    I have only ever nebbed Colistin.

    I already nebbed that before TOBI existed and when it did my doctor thought it best not to neb it.
    This is because my cultures showed me sensitive to only a few antibiotics. Tobramycine, Ceftazidime and Colimycine.

    With flare-ups I always got Tobra/Cefta and and was always nebbing Colistin. Colistin was known for the fact that you don’t get resistent to it very easily when nebbing so you can neb it for years and years and years. However with TOBI my doctor was afraid I would become resistent to that with the result that we didn’t have my IV combo at hand anymore, with the flare-up.

    Colistin does foam. Be sure when you mix it not to shake the vial but sort of twist it and don’t put the saline with the powder with too much force. You can also make it in advance, before nebbing Pulmozyme, HS, Albuterol or whatever or just a little before you want to do your nebbing

    Profile photo of MarjoleinMarjolein
    Member
    #171205234540

    I have only ever nebbed Colistin.

    I already nebbed that before TOBI existed and when it did my doctor thought it best not to neb it.
    This is because my cultures showed me sensitive to only a few antibiotics. Tobramycine, Ceftazidime and Colimycine.

    With flare-ups I always got Tobra/Cefta and and was always nebbing Colistin. Colistin was known for the fact that you don’t get resistent to it very easily when nebbing so you can neb it for years and years and years. However with TOBI my doctor was afraid I would become resistent to that with the result that we didn’t have my IV combo at hand anymore, with the flare-up.

    Colistin does foam. Be sure when you mix it not to shake the vial but sort of twist it and don’t put the saline with the powder with too much force. You can also make it in advance, before nebbing Pulmozyme, HS, Albuterol or whatever or just a little before you want to do your nebbing

    Profile photo of MarjoleinMarjolein
    Member
    #171205365875

    I have only ever nebbed Colistin.

    I already nebbed that before TOBI existed and when it did my doctor thought it best not to neb it.

    This is because my cultures showed me sensitive to only a few antibiotics. Tobramycine, Ceftazidime and Colimycine.

    With flare-ups I always got Tobra/Cefta and and was always nebbing Colistin. Colistin was known for the fact that you don’t get resistent to it very easily when nebbing so you can neb it for years and years and years. However with TOBI my doctor was afraid I would become resistent to that with the result that we didn’t have my IV combo at hand anymore, with the flare-up.

    Colistin does foam. Be sure when you mix it not to shake the vial but sort of twist it and don’t put the saline with the powder with too much force. You can also make it in advance, before nebbing Pulmozyme, HS, Albuterol or whatever or just a little before you want to do your nebbing

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