Tobi vs. Cayston

[amber682]

<P>DD has been culturing PA for almost 2 years off and on. We currently do Tobi every other month. She has a really tough time with it. She coughs non-stop the entire treatment, and off and on for a little while after. She also has coughing at night on tobi months.</P>
<P>We have tried everything we can think of. We do duoneb immediately before Tobi, we do nasal saline immediately after and a few times throughout the day. I think it just really irritates her airways. It bothers my son as well, he sometimes gets a light bloody nose on tobi months or some dry coughing. But it bothers my daughter ten times worse.</P>
<P>I am 100% positive it is the Tobi. Do you think it's possible the doctor will let her try Cayston instead? For anyone who uses it, or whose kids use it, does it seem less bothersome to you? And when is TIP supposed to come out? </P>

 

[amber682]

<P>DD has been culturing PA for almost 2 years off and on. We currently do Tobi every other month. She has a really tough time with it. She coughs non-stop the entire treatment, and off and on for a littlewhile after. She also has coughing at night on tobi months.</P>
<P>We have tried everything we can think of. We do duoneb immediately before Tobi, we do nasal saline immediately after and a few times throughout the day. I think it just really irritates her airways. It bothers my son as well, he sometimes gets a light bloody nose on tobi months or some dry coughing. But it bothers my daughterten times worse.</P>
<P>I am 100% positive it is the Tobi. Do you think it's possible the doctor will let her try Cayston instead? For anyone who uses it, or whose kids use it, does it seem less bothersome to you? And when is TIP supposed to come out? </P>

 

[amber682]

<P><BR><BR>DD has been culturing PA for almost 2 years off and on. We currently do Tobi every other month. She has a really tough time with it. She coughs non-stop the entire treatment, and off and on for a littlewhile after. She also has coughing at night on tobi months.</P>
<P>We have tried everything we can think of. We do duoneb immediately before Tobi, we do nasal saline immediately after and a few times throughout the day. I think it just really irritates her airways. It bothers my son as well, he sometimes gets a light bloody nose on tobi months or some dry coughing. But it bothers my daughterten times worse.</P>
<P>I am 100% positive it is the Tobi. Do you think it's possible the doctor will let her try Cayston instead? For anyone who uses it, or whose kids use it, does it seem less bothersome to you? And when is TIP supposed to come out? </P>

 

[JohnnaMarie]

I have taken Tobi and have had problems with it making me cough a ton too. The docs put me on Cayston to replace the Tobi. It is tons less bothersome if you ask me than the Tobi.

 

[JohnnaMarie]

I have taken Tobi and have had problems with it making me cough a ton too. The docs put me on Cayston to replace the Tobi. It is tons less bothersome if you ask me than the Tobi.

 

[JohnnaMarie]

I have taken Tobi and have had problems with it making me cough a ton too. The docs put me on Cayston to replace the Tobi. It is tons less bothersome if you ask me than the Tobi.

 

[just1more]

Everyone reacts differently, but it does sound like your daughter is having issues with the TOBI.

Have you discussed them with her CF Dr? They might try Cayston, but it also has a risk of coughing along with other issues.

I would talk to the Dr, if they can't find a good solution for the Tobi side effects then I would expect they will try the Cayston....good luck.

 

[just1more]

Everyone reacts differently, but it does sound like your daughter is having issues with the TOBI.

Have you discussed them with her CF Dr? They might try Cayston, but it also has a risk of coughing along with other issues.

I would talk to the Dr, if they can't find a good solution for the Tobi side effects then I would expect they will try the Cayston....good luck.

 

[just1more]

Everyone reacts differently, but it does sound like your daughter is having issues with the TOBI.
<br />
<br />Have you discussed them with her CF Dr? They might try Cayston, but it also has a risk of coughing along with other issues.
<br />
<br />I would talk to the Dr, if they can't find a good solution for the Tobi side effects then I would expect they will try the Cayston....good luck.
<br />

 

[sunshine5637]

<P>Several years ago I did Tobi, and had a difficult time with it so I stopped doing it.  A few months ago, I was having a really hard time getting and staying well when I was off my Cayston so I started the Tobi back again and I've not had any problems with it. My biggest complaint is that it takes too long and I have such a hard time fitting it into my schedule.</P>
<P> </P>
<P>I personally prefer the Cayston but I guess we don't get to pick and choose our treatments.  </P>

 

[sunshine5637]

<P>Several years ago I did Tobi, and had a difficult time with it so I stopped doing it. A few months ago, I was having a really hard time getting and staying well when I was off my Cayston so I started the Tobi back again and I've not had any problems with it.My biggest complaint is that it takes too long and I have such a hard time fitting it into my schedule.</P>
<P></P>
<P>I personally prefer the Cayston but I guess we don't get to pick and choose our treatments. </P>

 

[sunshine5637]

<P>Several years ago I did Tobi, and had a difficult time with it so I stopped doing it. A few months ago, I was having a really hard time getting and staying well when I was off my Cayston so I started the Tobi back again and I've not had any problems with it.My biggest complaint is that it takes too long and I have such a hard time fitting it into my schedule.</P>
<P></P>
<P>I personally prefer the Cayston but I guess we don't get to pick and choose our treatments. </P>