me with more questions

wanderlost

New member
So, I probably could do a search for this, but with 2 little ones, time is short - a few questions for you all...


Went to the clinic - my PFTS are still the same at about 75, so no big changes there. I did mention the bleeding and no one was overly concerned.

I brought up getting on TOBi and mucomyst - I thought mucomyst might be a good choice after reading Amy's Warwick stuff, but everyone there was telling me how nasty it was and how it made people's food taste funny and all of this busniess, so I am wondering what the experiences are with it for those of you who use it?

Also, I got and rx for Tobi, but I am a little hesitant to start on it simply because, though I am becoming very compliant, I know you build resitance very quickly to it if you don't use it as prescribed - and I want to make sure I have all my facts straight - so before i start:

does it have any side effects?

does anyone ever stop using it, or am I in for the long haul once I start?

Will I notice a difference in how I feel? Will I feel better? I notice a lot of days (especially if the weather is dreary or sticky) I just feel crappy, and i am guessing it is due to CF rleated stuff, so I am hoping for something to make me feel a bit better, which it seems treating my PA might do.

Finally, the dietician suggested if 6 creon weren't working for me, I might try pancreacarb - anyone on this? How much do you take, etc? Just curious.

I am very slow to change my regime, because although I am certainly not in the best shape ever, the way I have done things for 29 years seems ot be working and I just hate the idea of having to add more stuff into my life - but I also feel it is inevitable with the progression of this disease, and being proactive now will help me in the long run, kwim?? <img src="i/expressions/face-icon-small-smile.gif" border="0">

thanks in advance everyone!
 

wanderlost

New member
So, I probably could do a search for this, but with 2 little ones, time is short - a few questions for you all...


Went to the clinic - my PFTS are still the same at about 75, so no big changes there. I did mention the bleeding and no one was overly concerned.

I brought up getting on TOBi and mucomyst - I thought mucomyst might be a good choice after reading Amy's Warwick stuff, but everyone there was telling me how nasty it was and how it made people's food taste funny and all of this busniess, so I am wondering what the experiences are with it for those of you who use it?

Also, I got and rx for Tobi, but I am a little hesitant to start on it simply because, though I am becoming very compliant, I know you build resitance very quickly to it if you don't use it as prescribed - and I want to make sure I have all my facts straight - so before i start:

does it have any side effects?

does anyone ever stop using it, or am I in for the long haul once I start?

Will I notice a difference in how I feel? Will I feel better? I notice a lot of days (especially if the weather is dreary or sticky) I just feel crappy, and i am guessing it is due to CF rleated stuff, so I am hoping for something to make me feel a bit better, which it seems treating my PA might do.

Finally, the dietician suggested if 6 creon weren't working for me, I might try pancreacarb - anyone on this? How much do you take, etc? Just curious.

I am very slow to change my regime, because although I am certainly not in the best shape ever, the way I have done things for 29 years seems ot be working and I just hate the idea of having to add more stuff into my life - but I also feel it is inevitable with the progression of this disease, and being proactive now will help me in the long run, kwim?? <img src="i/expressions/face-icon-small-smile.gif" border="0">

thanks in advance everyone!
 

wanderlost

New member
So, I probably could do a search for this, but with 2 little ones, time is short - a few questions for you all...


Went to the clinic - my PFTS are still the same at about 75, so no big changes there. I did mention the bleeding and no one was overly concerned.

I brought up getting on TOBi and mucomyst - I thought mucomyst might be a good choice after reading Amy's Warwick stuff, but everyone there was telling me how nasty it was and how it made people's food taste funny and all of this busniess, so I am wondering what the experiences are with it for those of you who use it?

Also, I got and rx for Tobi, but I am a little hesitant to start on it simply because, though I am becoming very compliant, I know you build resitance very quickly to it if you don't use it as prescribed - and I want to make sure I have all my facts straight - so before i start:

does it have any side effects?

does anyone ever stop using it, or am I in for the long haul once I start?

Will I notice a difference in how I feel? Will I feel better? I notice a lot of days (especially if the weather is dreary or sticky) I just feel crappy, and i am guessing it is due to CF rleated stuff, so I am hoping for something to make me feel a bit better, which it seems treating my PA might do.

Finally, the dietician suggested if 6 creon weren't working for me, I might try pancreacarb - anyone on this? How much do you take, etc? Just curious.

I am very slow to change my regime, because although I am certainly not in the best shape ever, the way I have done things for 29 years seems ot be working and I just hate the idea of having to add more stuff into my life - but I also feel it is inevitable with the progression of this disease, and being proactive now will help me in the long run, kwim?? <img src="i/expressions/face-icon-small-smile.gif" border="0">

thanks in advance everyone!
 

wanderlost

New member
So, I probably could do a search for this, but with 2 little ones, time is short - a few questions for you all...


Went to the clinic - my PFTS are still the same at about 75, so no big changes there. I did mention the bleeding and no one was overly concerned.

I brought up getting on TOBi and mucomyst - I thought mucomyst might be a good choice after reading Amy's Warwick stuff, but everyone there was telling me how nasty it was and how it made people's food taste funny and all of this busniess, so I am wondering what the experiences are with it for those of you who use it?

Also, I got and rx for Tobi, but I am a little hesitant to start on it simply because, though I am becoming very compliant, I know you build resitance very quickly to it if you don't use it as prescribed - and I want to make sure I have all my facts straight - so before i start:

does it have any side effects?

does anyone ever stop using it, or am I in for the long haul once I start?

Will I notice a difference in how I feel? Will I feel better? I notice a lot of days (especially if the weather is dreary or sticky) I just feel crappy, and i am guessing it is due to CF rleated stuff, so I am hoping for something to make me feel a bit better, which it seems treating my PA might do.

Finally, the dietician suggested if 6 creon weren't working for me, I might try pancreacarb - anyone on this? How much do you take, etc? Just curious.

I am very slow to change my regime, because although I am certainly not in the best shape ever, the way I have done things for 29 years seems ot be working and I just hate the idea of having to add more stuff into my life - but I also feel it is inevitable with the progression of this disease, and being proactive now will help me in the long run, kwim?? <img src="i/expressions/face-icon-small-smile.gif" border="0">

thanks in advance everyone!
 

wanderlost

New member
So, I probably could do a search for this, but with 2 little ones, time is short - a few questions for you all...


Went to the clinic - my PFTS are still the same at about 75, so no big changes there. I did mention the bleeding and no one was overly concerned.

I brought up getting on TOBi and mucomyst - I thought mucomyst might be a good choice after reading Amy's Warwick stuff, but everyone there was telling me how nasty it was and how it made people's food taste funny and all of this busniess, so I am wondering what the experiences are with it for those of you who use it?

Also, I got and rx for Tobi, but I am a little hesitant to start on it simply because, though I am becoming very compliant, I know you build resitance very quickly to it if you don't use it as prescribed - and I want to make sure I have all my facts straight - so before i start:

does it have any side effects?

does anyone ever stop using it, or am I in for the long haul once I start?

Will I notice a difference in how I feel? Will I feel better? I notice a lot of days (especially if the weather is dreary or sticky) I just feel crappy, and i am guessing it is due to CF rleated stuff, so I am hoping for something to make me feel a bit better, which it seems treating my PA might do.

Finally, the dietician suggested if 6 creon weren't working for me, I might try pancreacarb - anyone on this? How much do you take, etc? Just curious.

I am very slow to change my regime, because although I am certainly not in the best shape ever, the way I have done things for 29 years seems ot be working and I just hate the idea of having to add more stuff into my life - but I also feel it is inevitable with the progression of this disease, and being proactive now will help me in the long run, kwim?? <img src="i/expressions/face-icon-small-smile.gif" border="0">

thanks in advance everyone!
 

wanderlost

New member
So, I probably could do a search for this, but with 2 little ones, time is short - a few questions for you all...


Went to the clinic - my PFTS are still the same at about 75, so no big changes there. I did mention the bleeding and no one was overly concerned.

I brought up getting on TOBi and mucomyst - I thought mucomyst might be a good choice after reading Amy's Warwick stuff, but everyone there was telling me how nasty it was and how it made people's food taste funny and all of this busniess, so I am wondering what the experiences are with it for those of you who use it?

Also, I got and rx for Tobi, but I am a little hesitant to start on it simply because, though I am becoming very compliant, I know you build resitance very quickly to it if you don't use it as prescribed - and I want to make sure I have all my facts straight - so before i start:

does it have any side effects?

does anyone ever stop using it, or am I in for the long haul once I start?

Will I notice a difference in how I feel? Will I feel better? I notice a lot of days (especially if the weather is dreary or sticky) I just feel crappy, and i am guessing it is due to CF rleated stuff, so I am hoping for something to make me feel a bit better, which it seems treating my PA might do.

Finally, the dietician suggested if 6 creon weren't working for me, I might try pancreacarb - anyone on this? How much do you take, etc? Just curious.

I am very slow to change my regime, because although I am certainly not in the best shape ever, the way I have done things for 29 years seems ot be working and I just hate the idea of having to add more stuff into my life - but I also feel it is inevitable with the progression of this disease, and being proactive now will help me in the long run, kwim?? <img src="i/expressions/face-icon-small-smile.gif" border="0">

thanks in advance everyone!
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>wanderlost</b></i>

I thought mucomyst might be a good choice after reading Amy's Warwick stuff, but everyone there was telling me how nasty it was and how it made people's food taste funny and all of this busniess, so I am wondering what the experiences are with it for those of you who use it?


</end quote></div>

that's really unfortunate that people at your clinic were discouraging you from taking control of your health. This really rubs me the wrong way.

Why not give you the Rx, let you try it, and if you don't like what's going on, you can stop it?

Ya, it's not the best smelling med. But guess what? Many people, because of how good it makes them feel, not only neb the stuff but <i> drink </i> the stuff.

So if I were you, I would get the med and try it. I think you are to be commended to trying to improve your health and be proactive. Don't let weird comments like that discourage you.

Try it for <u> yourself </u> and then make your own decision.

<div class="FTQUOTE"><begin quote>Also, I got and rx for Tobi, but I am a little hesitant to start on it simply because, though I am becoming very compliant, I know you build resitance very quickly to it if you don't use it as prescribed - and I want to make sure I have all my facts straight - so before i start: </end quote></div>

Great news. I think you will be pleased with the med.



<div class="FTQUOTE"><begin quote>does it have any side effects? </end quote></div>

It can. The <b> best </b> way to find out about side effects is through your pharmacist. usually prescribing info is posted online, but the www.abouttobi.com site has been down, damn Novartis.

Hoarse voice (when used with a traditional neb.... much much less so than with the eFlow), scratchy throat are probably the most common side effects.

Ringing in the ears can occure, but it's not very frequent.



<div class="FTQUOTE"><begin quote>does anyone ever stop using it, or am I in for the long haul once I start? </end quote></div>

I think most keep using it because it's a great way to keep feeling good. But it is to be used one month on, one moth off, in perpetuity. It's <u> not </u> meant to treat exacerbations (I gave my doc a lot of push back on this about 7 years ago when I started TOBI because I was so used to nebbing Tobramycin just for exacerbations).

If people stop, I think it's frequently for two reasons:

1. It takes a good amount of time. Maybe 15-20 minutes depending on the nebulizer and compressor you are using. However, many more people are switching to the eFlow to save time - 7-8 minutes neb time (among other things such as not losing their voice, portability, etc).

2. They acquire aminoglycoside resistant PA or their PA that they've been colonized with becomes resistant to that class (the class that TOBI belongs to). One month on and one month off is so that resistance doens't develop as quickly.




<div class="FTQUOTE"><begin quote>Will I notice a difference in how I feel? Will I feel better? </end quote></div>

I notice, if I'm having an exacerbation due to PA, that I feel better. If i have allergy enduced issues, then TOBI won't do me any good.

During my 1st few days of TOBI on my month's on, though, I do cough more because I'm getting junk up from my lungs.



<div class="FTQUOTE"><begin quote> the way I have done things for 29 years seems ot be working and I just hate the idea of having to add more stuff into my life </end quote></div>

Please, as you said, be careful of this train of thought. Those who were healthy for a long time who get caught in this cycle tend to get sicker quicker, when and if they do get ill.

As you stated correctly, you are being very smart by being proactive.

Go give your clinic hell for shying you away from Mucomyst. Shame on them.


</end quote></div>
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>wanderlost</b></i>

I thought mucomyst might be a good choice after reading Amy's Warwick stuff, but everyone there was telling me how nasty it was and how it made people's food taste funny and all of this busniess, so I am wondering what the experiences are with it for those of you who use it?


</end quote></div>

that's really unfortunate that people at your clinic were discouraging you from taking control of your health. This really rubs me the wrong way.

Why not give you the Rx, let you try it, and if you don't like what's going on, you can stop it?

Ya, it's not the best smelling med. But guess what? Many people, because of how good it makes them feel, not only neb the stuff but <i> drink </i> the stuff.

So if I were you, I would get the med and try it. I think you are to be commended to trying to improve your health and be proactive. Don't let weird comments like that discourage you.

Try it for <u> yourself </u> and then make your own decision.

<div class="FTQUOTE"><begin quote>Also, I got and rx for Tobi, but I am a little hesitant to start on it simply because, though I am becoming very compliant, I know you build resitance very quickly to it if you don't use it as prescribed - and I want to make sure I have all my facts straight - so before i start: </end quote></div>

Great news. I think you will be pleased with the med.



<div class="FTQUOTE"><begin quote>does it have any side effects? </end quote></div>

It can. The <b> best </b> way to find out about side effects is through your pharmacist. usually prescribing info is posted online, but the www.abouttobi.com site has been down, damn Novartis.

Hoarse voice (when used with a traditional neb.... much much less so than with the eFlow), scratchy throat are probably the most common side effects.

Ringing in the ears can occure, but it's not very frequent.



<div class="FTQUOTE"><begin quote>does anyone ever stop using it, or am I in for the long haul once I start? </end quote></div>

I think most keep using it because it's a great way to keep feeling good. But it is to be used one month on, one moth off, in perpetuity. It's <u> not </u> meant to treat exacerbations (I gave my doc a lot of push back on this about 7 years ago when I started TOBI because I was so used to nebbing Tobramycin just for exacerbations).

If people stop, I think it's frequently for two reasons:

1. It takes a good amount of time. Maybe 15-20 minutes depending on the nebulizer and compressor you are using. However, many more people are switching to the eFlow to save time - 7-8 minutes neb time (among other things such as not losing their voice, portability, etc).

2. They acquire aminoglycoside resistant PA or their PA that they've been colonized with becomes resistant to that class (the class that TOBI belongs to). One month on and one month off is so that resistance doens't develop as quickly.




<div class="FTQUOTE"><begin quote>Will I notice a difference in how I feel? Will I feel better? </end quote></div>

I notice, if I'm having an exacerbation due to PA, that I feel better. If i have allergy enduced issues, then TOBI won't do me any good.

During my 1st few days of TOBI on my month's on, though, I do cough more because I'm getting junk up from my lungs.



<div class="FTQUOTE"><begin quote> the way I have done things for 29 years seems ot be working and I just hate the idea of having to add more stuff into my life </end quote></div>

Please, as you said, be careful of this train of thought. Those who were healthy for a long time who get caught in this cycle tend to get sicker quicker, when and if they do get ill.

As you stated correctly, you are being very smart by being proactive.

Go give your clinic hell for shying you away from Mucomyst. Shame on them.


</end quote></div>
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>wanderlost</b></i>

I thought mucomyst might be a good choice after reading Amy's Warwick stuff, but everyone there was telling me how nasty it was and how it made people's food taste funny and all of this busniess, so I am wondering what the experiences are with it for those of you who use it?


</end quote></div>

that's really unfortunate that people at your clinic were discouraging you from taking control of your health. This really rubs me the wrong way.

Why not give you the Rx, let you try it, and if you don't like what's going on, you can stop it?

Ya, it's not the best smelling med. But guess what? Many people, because of how good it makes them feel, not only neb the stuff but <i> drink </i> the stuff.

So if I were you, I would get the med and try it. I think you are to be commended to trying to improve your health and be proactive. Don't let weird comments like that discourage you.

Try it for <u> yourself </u> and then make your own decision.

<div class="FTQUOTE"><begin quote>Also, I got and rx for Tobi, but I am a little hesitant to start on it simply because, though I am becoming very compliant, I know you build resitance very quickly to it if you don't use it as prescribed - and I want to make sure I have all my facts straight - so before i start: </end quote></div>

Great news. I think you will be pleased with the med.



<div class="FTQUOTE"><begin quote>does it have any side effects? </end quote></div>

It can. The <b> best </b> way to find out about side effects is through your pharmacist. usually prescribing info is posted online, but the www.abouttobi.com site has been down, damn Novartis.

Hoarse voice (when used with a traditional neb.... much much less so than with the eFlow), scratchy throat are probably the most common side effects.

Ringing in the ears can occure, but it's not very frequent.



<div class="FTQUOTE"><begin quote>does anyone ever stop using it, or am I in for the long haul once I start? </end quote></div>

I think most keep using it because it's a great way to keep feeling good. But it is to be used one month on, one moth off, in perpetuity. It's <u> not </u> meant to treat exacerbations (I gave my doc a lot of push back on this about 7 years ago when I started TOBI because I was so used to nebbing Tobramycin just for exacerbations).

If people stop, I think it's frequently for two reasons:

1. It takes a good amount of time. Maybe 15-20 minutes depending on the nebulizer and compressor you are using. However, many more people are switching to the eFlow to save time - 7-8 minutes neb time (among other things such as not losing their voice, portability, etc).

2. They acquire aminoglycoside resistant PA or their PA that they've been colonized with becomes resistant to that class (the class that TOBI belongs to). One month on and one month off is so that resistance doens't develop as quickly.




<div class="FTQUOTE"><begin quote>Will I notice a difference in how I feel? Will I feel better? </end quote></div>

I notice, if I'm having an exacerbation due to PA, that I feel better. If i have allergy enduced issues, then TOBI won't do me any good.

During my 1st few days of TOBI on my month's on, though, I do cough more because I'm getting junk up from my lungs.



<div class="FTQUOTE"><begin quote> the way I have done things for 29 years seems ot be working and I just hate the idea of having to add more stuff into my life </end quote></div>

Please, as you said, be careful of this train of thought. Those who were healthy for a long time who get caught in this cycle tend to get sicker quicker, when and if they do get ill.

As you stated correctly, you are being very smart by being proactive.

Go give your clinic hell for shying you away from Mucomyst. Shame on them.


</end quote></div>
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>wanderlost</b></i>

I thought mucomyst might be a good choice after reading Amy's Warwick stuff, but everyone there was telling me how nasty it was and how it made people's food taste funny and all of this busniess, so I am wondering what the experiences are with it for those of you who use it?


</end quote></div>

that's really unfortunate that people at your clinic were discouraging you from taking control of your health. This really rubs me the wrong way.

Why not give you the Rx, let you try it, and if you don't like what's going on, you can stop it?

Ya, it's not the best smelling med. But guess what? Many people, because of how good it makes them feel, not only neb the stuff but <i> drink </i> the stuff.

So if I were you, I would get the med and try it. I think you are to be commended to trying to improve your health and be proactive. Don't let weird comments like that discourage you.

Try it for <u> yourself </u> and then make your own decision.

<div class="FTQUOTE"><begin quote>Also, I got and rx for Tobi, but I am a little hesitant to start on it simply because, though I am becoming very compliant, I know you build resitance very quickly to it if you don't use it as prescribed - and I want to make sure I have all my facts straight - so before i start: </end quote></div>

Great news. I think you will be pleased with the med.



<div class="FTQUOTE"><begin quote>does it have any side effects? </end quote></div>

It can. The <b> best </b> way to find out about side effects is through your pharmacist. usually prescribing info is posted online, but the www.abouttobi.com site has been down, damn Novartis.

Hoarse voice (when used with a traditional neb.... much much less so than with the eFlow), scratchy throat are probably the most common side effects.

Ringing in the ears can occure, but it's not very frequent.



<div class="FTQUOTE"><begin quote>does anyone ever stop using it, or am I in for the long haul once I start? </end quote></div>

I think most keep using it because it's a great way to keep feeling good. But it is to be used one month on, one moth off, in perpetuity. It's <u> not </u> meant to treat exacerbations (I gave my doc a lot of push back on this about 7 years ago when I started TOBI because I was so used to nebbing Tobramycin just for exacerbations).

If people stop, I think it's frequently for two reasons:

1. It takes a good amount of time. Maybe 15-20 minutes depending on the nebulizer and compressor you are using. However, many more people are switching to the eFlow to save time - 7-8 minutes neb time (among other things such as not losing their voice, portability, etc).

2. They acquire aminoglycoside resistant PA or their PA that they've been colonized with becomes resistant to that class (the class that TOBI belongs to). One month on and one month off is so that resistance doens't develop as quickly.




<div class="FTQUOTE"><begin quote>Will I notice a difference in how I feel? Will I feel better? </end quote></div>

I notice, if I'm having an exacerbation due to PA, that I feel better. If i have allergy enduced issues, then TOBI won't do me any good.

During my 1st few days of TOBI on my month's on, though, I do cough more because I'm getting junk up from my lungs.



<div class="FTQUOTE"><begin quote> the way I have done things for 29 years seems ot be working and I just hate the idea of having to add more stuff into my life </end quote></div>

Please, as you said, be careful of this train of thought. Those who were healthy for a long time who get caught in this cycle tend to get sicker quicker, when and if they do get ill.

As you stated correctly, you are being very smart by being proactive.

Go give your clinic hell for shying you away from Mucomyst. Shame on them.


</end quote></div>
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>wanderlost</b></i>

I thought mucomyst might be a good choice after reading Amy's Warwick stuff, but everyone there was telling me how nasty it was and how it made people's food taste funny and all of this busniess, so I am wondering what the experiences are with it for those of you who use it?


</end quote>

that's really unfortunate that people at your clinic were discouraging you from taking control of your health. This really rubs me the wrong way.

Why not give you the Rx, let you try it, and if you don't like what's going on, you can stop it?

Ya, it's not the best smelling med. But guess what? Many people, because of how good it makes them feel, not only neb the stuff but <i> drink </i> the stuff.

So if I were you, I would get the med and try it. I think you are to be commended to trying to improve your health and be proactive. Don't let weird comments like that discourage you.

Try it for <u> yourself </u> and then make your own decision.

<div class="FTQUOTE"><begin quote>Also, I got and rx for Tobi, but I am a little hesitant to start on it simply because, though I am becoming very compliant, I know you build resitance very quickly to it if you don't use it as prescribed - and I want to make sure I have all my facts straight - so before i start: </end quote>

Great news. I think you will be pleased with the med.



<div class="FTQUOTE"><begin quote>does it have any side effects? </end quote>

It can. The <b> best </b> way to find out about side effects is through your pharmacist. usually prescribing info is posted online, but the www.abouttobi.com site has been down, damn Novartis.

Hoarse voice (when used with a traditional neb.... much much less so than with the eFlow), scratchy throat are probably the most common side effects.

Ringing in the ears can occure, but it's not very frequent.



<div class="FTQUOTE"><begin quote>does anyone ever stop using it, or am I in for the long haul once I start? </end quote>

I think most keep using it because it's a great way to keep feeling good. But it is to be used one month on, one moth off, in perpetuity. It's <u> not </u> meant to treat exacerbations (I gave my doc a lot of push back on this about 7 years ago when I started TOBI because I was so used to nebbing Tobramycin just for exacerbations).

If people stop, I think it's frequently for two reasons:

1. It takes a good amount of time. Maybe 15-20 minutes depending on the nebulizer and compressor you are using. However, many more people are switching to the eFlow to save time - 7-8 minutes neb time (among other things such as not losing their voice, portability, etc).

2. They acquire aminoglycoside resistant PA or their PA that they've been colonized with becomes resistant to that class (the class that TOBI belongs to). One month on and one month off is so that resistance doens't develop as quickly.




<div class="FTQUOTE"><begin quote>Will I notice a difference in how I feel? Will I feel better? </end quote>

I notice, if I'm having an exacerbation due to PA, that I feel better. If i have allergy enduced issues, then TOBI won't do me any good.

During my 1st few days of TOBI on my month's on, though, I do cough more because I'm getting junk up from my lungs.



<div class="FTQUOTE"><begin quote> the way I have done things for 29 years seems ot be working and I just hate the idea of having to add more stuff into my life </end quote>

Please, as you said, be careful of this train of thought. Those who were healthy for a long time who get caught in this cycle tend to get sicker quicker, when and if they do get ill.

As you stated correctly, you are being very smart by being proactive.

Go give your clinic hell for shying you away from Mucomyst. Shame on them.


</end quote>
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>wanderlost</b></i>

I thought mucomyst might be a good choice after reading Amy's Warwick stuff, but everyone there was telling me how nasty it was and how it made people's food taste funny and all of this busniess, so I am wondering what the experiences are with it for those of you who use it?


</end quote>

that's really unfortunate that people at your clinic were discouraging you from taking control of your health. This really rubs me the wrong way.

Why not give you the Rx, let you try it, and if you don't like what's going on, you can stop it?

Ya, it's not the best smelling med. But guess what? Many people, because of how good it makes them feel, not only neb the stuff but <i> drink </i> the stuff.

So if I were you, I would get the med and try it. I think you are to be commended to trying to improve your health and be proactive. Don't let weird comments like that discourage you.

Try it for <u> yourself </u> and then make your own decision.

<div class="FTQUOTE"><begin quote>Also, I got and rx for Tobi, but I am a little hesitant to start on it simply because, though I am becoming very compliant, I know you build resitance very quickly to it if you don't use it as prescribed - and I want to make sure I have all my facts straight - so before i start: </end quote>

Great news. I think you will be pleased with the med.



<div class="FTQUOTE"><begin quote>does it have any side effects? </end quote>

It can. The <b> best </b> way to find out about side effects is through your pharmacist. usually prescribing info is posted online, but the www.abouttobi.com site has been down, damn Novartis.

Hoarse voice (when used with a traditional neb.... much much less so than with the eFlow), scratchy throat are probably the most common side effects.

Ringing in the ears can occure, but it's not very frequent.



<div class="FTQUOTE"><begin quote>does anyone ever stop using it, or am I in for the long haul once I start? </end quote>

I think most keep using it because it's a great way to keep feeling good. But it is to be used one month on, one moth off, in perpetuity. It's <u> not </u> meant to treat exacerbations (I gave my doc a lot of push back on this about 7 years ago when I started TOBI because I was so used to nebbing Tobramycin just for exacerbations).

If people stop, I think it's frequently for two reasons:

1. It takes a good amount of time. Maybe 15-20 minutes depending on the nebulizer and compressor you are using. However, many more people are switching to the eFlow to save time - 7-8 minutes neb time (among other things such as not losing their voice, portability, etc).

2. They acquire aminoglycoside resistant PA or their PA that they've been colonized with becomes resistant to that class (the class that TOBI belongs to). One month on and one month off is so that resistance doens't develop as quickly.




<div class="FTQUOTE"><begin quote>Will I notice a difference in how I feel? Will I feel better? </end quote>

I notice, if I'm having an exacerbation due to PA, that I feel better. If i have allergy enduced issues, then TOBI won't do me any good.

During my 1st few days of TOBI on my month's on, though, I do cough more because I'm getting junk up from my lungs.



<div class="FTQUOTE"><begin quote> the way I have done things for 29 years seems ot be working and I just hate the idea of having to add more stuff into my life </end quote>

Please, as you said, be careful of this train of thought. Those who were healthy for a long time who get caught in this cycle tend to get sicker quicker, when and if they do get ill.

As you stated correctly, you are being very smart by being proactive.

Go give your clinic hell for shying you away from Mucomyst. Shame on them.


</end quote>
 

Ratatosk

Administrator
Staff member
DS has been on tobi 28 days off/on since he was 3 months old. He's 4 now. DH usually hangs out with him during tobi time. We have noticed that DS' nose seems to be a little stuffy during tobi time (he digs for gold more) and once in awhile at the start he sounds a little froggy/hoarse, but it goes away after a day or so. DH says he notices his throat and nose seem to burn a little bit. Nothing major, just a slight irritant. It's also sticky, but I hear mucomyst is also -- and there seems to be a haze throughout the house afterwards.

DS had his hearing tested last week. Is fine. One of the side effects can be ringing in the ears, although not sure he's old enough to tell us he's having issues, so I always wonder about the hearing issue.
 

Ratatosk

Administrator
Staff member
DS has been on tobi 28 days off/on since he was 3 months old. He's 4 now. DH usually hangs out with him during tobi time. We have noticed that DS' nose seems to be a little stuffy during tobi time (he digs for gold more) and once in awhile at the start he sounds a little froggy/hoarse, but it goes away after a day or so. DH says he notices his throat and nose seem to burn a little bit. Nothing major, just a slight irritant. It's also sticky, but I hear mucomyst is also -- and there seems to be a haze throughout the house afterwards.

DS had his hearing tested last week. Is fine. One of the side effects can be ringing in the ears, although not sure he's old enough to tell us he's having issues, so I always wonder about the hearing issue.
 

Ratatosk

Administrator
Staff member
DS has been on tobi 28 days off/on since he was 3 months old. He's 4 now. DH usually hangs out with him during tobi time. We have noticed that DS' nose seems to be a little stuffy during tobi time (he digs for gold more) and once in awhile at the start he sounds a little froggy/hoarse, but it goes away after a day or so. DH says he notices his throat and nose seem to burn a little bit. Nothing major, just a slight irritant. It's also sticky, but I hear mucomyst is also -- and there seems to be a haze throughout the house afterwards.

DS had his hearing tested last week. Is fine. One of the side effects can be ringing in the ears, although not sure he's old enough to tell us he's having issues, so I always wonder about the hearing issue.
 

Ratatosk

Administrator
Staff member
DS has been on tobi 28 days off/on since he was 3 months old. He's 4 now. DH usually hangs out with him during tobi time. We have noticed that DS' nose seems to be a little stuffy during tobi time (he digs for gold more) and once in awhile at the start he sounds a little froggy/hoarse, but it goes away after a day or so. DH says he notices his throat and nose seem to burn a little bit. Nothing major, just a slight irritant. It's also sticky, but I hear mucomyst is also -- and there seems to be a haze throughout the house afterwards.

DS had his hearing tested last week. Is fine. One of the side effects can be ringing in the ears, although not sure he's old enough to tell us he's having issues, so I always wonder about the hearing issue.
 

Ratatosk

Administrator
Staff member
DS has been on tobi 28 days off/on since he was 3 months old. He's 4 now. DH usually hangs out with him during tobi time. We have noticed that DS' nose seems to be a little stuffy during tobi time (he digs for gold more) and once in awhile at the start he sounds a little froggy/hoarse, but it goes away after a day or so. DH says he notices his throat and nose seem to burn a little bit. Nothing major, just a slight irritant. It's also sticky, but I hear mucomyst is also -- and there seems to be a haze throughout the house afterwards.

DS had his hearing tested last week. Is fine. One of the side effects can be ringing in the ears, although not sure he's old enough to tell us he's having issues, so I always wonder about the hearing issue.
 

Ratatosk

Administrator
Staff member
DS has been on tobi 28 days off/on since he was 3 months old. He's 4 now. DH usually hangs out with him during tobi time. We have noticed that DS' nose seems to be a little stuffy during tobi time (he digs for gold more) and once in awhile at the start he sounds a little froggy/hoarse, but it goes away after a day or so. DH says he notices his throat and nose seem to burn a little bit. Nothing major, just a slight irritant. It's also sticky, but I hear mucomyst is also -- and there seems to be a haze throughout the house afterwards.

DS had his hearing tested last week. Is fine. One of the side effects can be ringing in the ears, although not sure he's old enough to tell us he's having issues, so I always wonder about the hearing issue.
 

catboogie

New member
hey!

my doctor said the same thing to me too, when i asked about the mucomyst. 'nobody uses that anymore.' 'it can be really irritating to some people's lungs.' 'it smells bad.' yeah, yeah, yeah. i got an RX for it anyway and tried drinking it--turns out, it made me short of breath. however, i would encourage you to try it, as everyone is different.

about the tobi: i know what you're saying about feeling like if you start it you're going to be on it forever. i don't think you should think of it that way. i think you should say, i'm going to do this month on/month off for 6 months and then see how i feel. if you feel it has helped you, then maybe continue on. if not, then maybe it's not a good fit for you. i myself am probably going to start cycling Tobi. i haven't found it very effective when i just take it for an exacerbation.

i hear what you're saying about not wanting to fix what ain't broke with your health. however, i agree with amy that this is a dangerous way to think. since you started doing the vest, i think Tobi might be another good thing to incorporate into your routine. a lot of people's cf kicks in more the older they get, so it's good for you to get a jump start on it.

good luck!
 

catboogie

New member
hey!

my doctor said the same thing to me too, when i asked about the mucomyst. 'nobody uses that anymore.' 'it can be really irritating to some people's lungs.' 'it smells bad.' yeah, yeah, yeah. i got an RX for it anyway and tried drinking it--turns out, it made me short of breath. however, i would encourage you to try it, as everyone is different.

about the tobi: i know what you're saying about feeling like if you start it you're going to be on it forever. i don't think you should think of it that way. i think you should say, i'm going to do this month on/month off for 6 months and then see how i feel. if you feel it has helped you, then maybe continue on. if not, then maybe it's not a good fit for you. i myself am probably going to start cycling Tobi. i haven't found it very effective when i just take it for an exacerbation.

i hear what you're saying about not wanting to fix what ain't broke with your health. however, i agree with amy that this is a dangerous way to think. since you started doing the vest, i think Tobi might be another good thing to incorporate into your routine. a lot of people's cf kicks in more the older they get, so it's good for you to get a jump start on it.

good luck!
 
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