Tobi

[sarabeth87]

EVERYTIME I start Tobi, I get sick. I'll feel like I'm getting an infection and usually have to stop it to start IVs. I tell my doctor this ALL the time, but I guess she thinks I'm just making it up. In fact I started it Sunday and I had just finished my first monyh of cayston and was feeling great. Well, within 2 days on Tobi, I started running fevers and just feeling horrible, so I've stopped taking it. My doctor wants me to continue, but I just don't want to.

 

[sunflower]

I would stop taking it. Let me tell you my story. I have been taking it four months now after the last two treatments and always two weeks into it I get sick but this tine is nothing like the last it was bad then but worse now. I am so I'll been in bed since Friday coughing, vomiting on and off, loss of appetite, tightness in the chest OMG! Dreadful it was. Then on Thursday midnight coughing up blood bad I couldn't believe it apprix 50mls now that a lot for me. I rang the hospital next day and I know tobi did this to me and I need IV's next week. I won't be taking it again EVEr n pray we get Cayston in Ireland soon. My advice is you know your own body n you know yourself if Tobi has caused you problems. Stop it completely or take two months off it, is your IGe level down? Tobi brought mine down a good bit. Good by Tobi n hurray up Tobi and get here.
Take care


Sunflower
40yrs old
ABPA,
Asthma,
Bronchi
Psudemonas and multi resistant bummer.
Fiancé a carrier of CF
Gene type DF508/p67l

 

[sunflower]

I would stop taking it. Let me tell you my story. I have been taking it four months now after the last two treatments and always two weeks into it I get sick but this tine is nothing like the last it was bad then but worse now. I am so I'll been in bed since Friday coughing, vomiting on and off, loss of appetite, tightness in the chest OMG! Dreadful it was. Then on Thursday midnight coughing up blood bad I couldn't believe it apprix 50mls now that a lot for me. I rang the hospital next day and I know tobi did this to me and I need IV's next week. I won't be taking it again EVEr n pray we get Cayston in Ireland soon. My advice is you know your own body n you know yourself if Tobi has caused you problems. Stop it completely or take two months off it, is your IGe level down? Tobi brought mine down a good bit. Good by Tobi n hurray up Tobi and get here.
Take care


Sunflower
40yrs old
ABPA,
Asthma,
Bronchi
Psudemonas and multi resistant bummer.
Fiancé a carrier of CF
Gene type DF508/p67l

 

[sunflower]

I would stop taking it. Let me tell you my story. I have been taking it four months now after the last two treatments and always two weeks into it I get sick but this tine is nothing like the last it was bad then but worse now. I am so I'll been in bed since Friday coughing, vomiting on and off, loss of appetite, tightness in the chest OMG! Dreadful it was. Then on Thursday midnight coughing up blood bad I couldn't believe it apprix 50mls now that a lot for me. I rang the hospital next day and I know tobi did this to me and I need IV's next week. I won't be taking it again EVEr n pray we get Cayston in Ireland soon. My advice is you know your own body n you know yourself if Tobi has caused you problems. Stop it completely or take two months off it, is your IGe level down? Tobi brought mine down a good bit. Good by Tobi n hurray up Tobi and get here.
<br />Take care
<br />
<br />
<br />Sunflower
<br />40yrs old
<br />ABPA,
<br />Asthma,
<br />Bronchi
<br />Psudemonas and multi resistant bummer.
<br />Fiancé a carrier of CF
<br />Gene type DF508/p67l

 

[alegris]

Sorry I'm adding more to my rant! So I stopped the Tobi when I started bleeding because I never get lung bleeds and that scares the crap out of me. It just so happens I had an appointment the week I stopped the Tobi. My FEV1 has be around 65-67% for years and years. This time I blew a 47%!! Can you imagine that! 20% lower!! My doctor freaked out and said I needed IV antibiotics immediately (I haven't had IV's in 20 years). I explained to him about the Tobi but he said it's very rare to have a reaction like that and he's giving me a month to get my numbers up or we have to discuss 'more serious options.' Now it's a week later, I'm back on saline and my numbers are almost back to normal (by my at home monitor). Ugh! Tobi sucks and I hate doctors that treat you like a liar and make you feel like a dolt! I can't wait to try Cayston.

 

[alegris]

Sorry I'm adding more to my rant! So I stopped the Tobi when I started bleeding because I never get lung bleeds and that scares the crap out of me. It just so happens I had an appointment the week I stopped the Tobi. My FEV1 has be around 65-67% for years and years. This time I blew a 47%!! Can you imagine that! 20% lower!! My doctor freaked out and said I needed IV antibiotics immediately (I haven't had IV's in 20 years). I explained to him about the Tobi but he said it's very rare to have a reaction like that and he's giving me a month to get my numbers up or we have to discuss 'more serious options.' Now it's a week later, I'm back on saline and my numbers are almost back to normal (by my at home monitor). Ugh! Tobi sucks and I hate doctors that treat you like a liar and make you feel like a dolt! I can't wait to try Cayston.

 

[alegris]

Sorry I'm adding more to my rant! So I stopped the Tobi when I started bleeding because I never get lung bleeds and that scares the crap out of me. It just so happens I had an appointment the week I stopped the Tobi. My FEV1 has be around 65-67% for years and years. This time I blew a 47%!! Can you imagine that! 20% lower!! My doctor freaked out and said I needed IV antibiotics immediately (I haven't had IV's in 20 years). I explained to him about the Tobi but he said it's very rare to have a reaction like that and he's giving me a month to get my numbers up or we have to discuss 'more serious options.' Now it's a week later, I'm back on saline and my numbers are almost back to normal (by my at home monitor). Ugh! Tobi sucks and I hate doctors that treat you like a liar and make you feel like a dolt! I can't wait to try Cayston.

 

[bigstar]

Im totally with you guys! Tobi makes me feel soooo sick. I finished an IV course not even 20 days ago! Everything was fine and i was feeling great until the day for Tobi came! Its like im having a flu and i know i dont. Low fevers, coughing, feeling like crap, and a weird cough and some bleeding. I HATE IT. Ive explained it to my doctor a thousand times but she thinks im overreacting! It sucks when your opinion as a CF specialist counts less!

 

[bigstar]

Im totally with you guys! Tobi makes me feel soooo sick. I finished an IV course not even 20 days ago! Everything was fine and i was feeling great until the day for Tobi came! Its like im having a flu and i know i dont. Low fevers, coughing, feeling like crap, and a weird cough and some bleeding. I HATE IT. Ive explained it to my doctor a thousand times but she thinks im overreacting! It sucks when your opinion as a CF specialist counts less!

 

[bigstar]

Im totally with you guys! Tobi makes me feel soooo sick. I finished an IV course not even 20 days ago! Everything was fine and i was feeling great until the day for Tobi came! Its like im having a flu and i know i dont. Low fevers, coughing, feeling like crap, and a weird cough and some bleeding. I HATE IT. Ive explained it to my doctor a thousand times but she thinks im overreacting! It sucks when your opinion as a CF specialist counts less!

 

[mjp317]

I was just diagnosed at 39 this past Tuesday. Started Tobi and today I have NO VOICE - none at all. And when I do, its hoarse...is that normal? I am going to call tomorrow, but I doubt they will be able to hear me! I am so new to all of this!

 

[mjp317]

I was just diagnosed at 39 this past Tuesday. Started Tobi and today I have NO VOICE - none at all. And when I do, its hoarse...is that normal? I am going to call tomorrow, but I doubt they will be able to hear me! I am so new to all of this!

 

[mjp317]

I was just diagnosed at 39 this past Tuesday. Started Tobi and today I have NO VOICE - none at all. And when I do, its hoarse...is that normal? I am going to call tomorrow, but I doubt they will be able to hear me! I am so new to all of this!

 

[oatmeal28]

I had written a similar post a few weeks ago because I had the same issues with Tobi after about 2 weeks of being fine on it. I went off it for a week and just continued with the Cipro and Doxy and felt great. I went back to my clinic on Friday and my FEV1's showed no difference from when I first started all the meds! so NOW my doctor wants me to do another 14 days of the two pills and try Tobi again. Yesterday was my first day back on it and I can barely breathe. Even with Albuterol it's really not helping. I have now missed work for the second time within two weeks which was more than I ever have EVER...I am wondering if she will move me to Cayston..b/c I find it pointless if I just keep getting sicker :/

 

[oatmeal28]

I had written a similar post a few weeks ago because I had the same issues with Tobi after about 2 weeks of being fine on it. I went off it for a week and just continued with the Cipro and Doxy and felt great. I went back to my clinic on Friday and my FEV1's showed no difference from when I first started all the meds! so NOW my doctor wants me to do another 14 days of the two pills and try Tobi again. Yesterday was my first day back on it and I can barely breathe. Even with Albuterol it's really not helping. I have now missed work for the second time within two weeks which was more than I ever have EVER...I am wondering if she will move me to Cayston..b/c I find it pointless if I just keep getting sicker :/

 

[oatmeal28]

I had written a similar post a few weeks ago because I had the same issues with Tobi after about 2 weeks of being fine on it. I went off it for a week and just continued with the Cipro and Doxy and felt great. I went back to my clinic on Friday and my FEV1's showed no difference from when I first started all the meds! so NOW my doctor wants me to do another 14 days of the two pills and try Tobi again. Yesterday was my first day back on it and I can barely breathe. Even with Albuterol it's really not helping. I have now missed work for the second time within two weeks which was more than I ever have EVER...I am wondering if she will move me to Cayston..b/c I find it pointless if I just keep getting sicker :/