Why won't they listen??

Littlemiss · Jul 8, 2009

So..

I haven't posted in a while, but am so cranky about what happened at clinic yesterday had to get some of your thoughts.

I have been feeling myself go downhill a bit over the last few weeks but stupidly put off going to the Dr. To make a long story short, I went yesterday and found that I had dropped to 70% fev1, which is really bad for me because I am usually around 85. I was sure that the Dr would want to do something agressive with such a big drop (it's the lowest I've been EVER) and was prepared for the worst (haven't been on IVs since my teens). Anyway, they didn't want me to do iv's, but try some nebs first (fair enough).

My problem is this: they put me on tobra and cipro, when I could see on the computer that one of my PA strains was resistant to tobra. I have done tobra heaps before and it never works. I told them this, and that the last time I had timentin it worked really well, plus both strains of PA are senstive to timentin. So after much faffing around, I ended up with a script for tobra.

I am annoyed because they won't listen, but I really want to know from you all if it is normal to Rx something that one bug is resistant to, wouldn't it make much more sense to Rx abx that both bugs are sensitive to??

I am ranting, sorry <img src="i/expressions/face-icon-small-sad.gif" border="0">

Please reply

AJ

Littlemiss · Jul 8, 2009

So..

I haven't posted in a while, but am so cranky about what happened at clinic yesterday had to get some of your thoughts.

I have been feeling myself go downhill a bit over the last few weeks but stupidly put off going to the Dr. To make a long story short, I went yesterday and found that I had dropped to 70% fev1, which is really bad for me because I am usually around 85. I was sure that the Dr would want to do something agressive with such a big drop (it's the lowest I've been EVER) and was prepared for the worst (haven't been on IVs since my teens). Anyway, they didn't want me to do iv's, but try some nebs first (fair enough).

My problem is this: they put me on tobra and cipro, when I could see on the computer that one of my PA strains was resistant to tobra. I have done tobra heaps before and it never works. I told them this, and that the last time I had timentin it worked really well, plus both strains of PA are senstive to timentin. So after much faffing around, I ended up with a script for tobra.

I am annoyed because they won't listen, but I really want to know from you all if it is normal to Rx something that one bug is resistant to, wouldn't it make much more sense to Rx abx that both bugs are sensitive to??

I am ranting, sorry <img src="i/expressions/face-icon-small-sad.gif" border="0">

Please reply

AJ

Littlemiss · Jul 8, 2009

So..

I haven't posted in a while, but am so cranky about what happened at clinic yesterday had to get some of your thoughts.

I have been feeling myself go downhill a bit over the last few weeks but stupidly put off going to the Dr. To make a long story short, I went yesterday and found that I had dropped to 70% fev1, which is really bad for me because I am usually around 85. I was sure that the Dr would want to do something agressive with such a big drop (it's the lowest I've been EVER) and was prepared for the worst (haven't been on IVs since my teens). Anyway, they didn't want me to do iv's, but try some nebs first (fair enough).

My problem is this: they put me on tobra and cipro, when I could see on the computer that one of my PA strains was resistant to tobra. I have done tobra heaps before and it never works. I told them this, and that the last time I had timentin it worked really well, plus both strains of PA are senstive to timentin. So after much faffing around, I ended up with a script for tobra.

I am annoyed because they won't listen, but I really want to know from you all if it is normal to Rx something that one bug is resistant to, wouldn't it make much more sense to Rx abx that both bugs are sensitive to??

I am ranting, sorry <img src="i/expressions/face-icon-small-sad.gif" border="0">

Please reply

AJ

Littlemiss · Jul 8, 2009

So..

I haven't posted in a while, but am so cranky about what happened at clinic yesterday had to get some of your thoughts.

I have been feeling myself go downhill a bit over the last few weeks but stupidly put off going to the Dr. To make a long story short, I went yesterday and found that I had dropped to 70% fev1, which is really bad for me because I am usually around 85. I was sure that the Dr would want to do something agressive with such a big drop (it's the lowest I've been EVER) and was prepared for the worst (haven't been on IVs since my teens). Anyway, they didn't want me to do iv's, but try some nebs first (fair enough).

My problem is this: they put me on tobra and cipro, when I could see on the computer that one of my PA strains was resistant to tobra. I have done tobra heaps before and it never works. I told them this, and that the last time I had timentin it worked really well, plus both strains of PA are senstive to timentin. So after much faffing around, I ended up with a script for tobra.

I am annoyed because they won't listen, but I really want to know from you all if it is normal to Rx something that one bug is resistant to, wouldn't it make much more sense to Rx abx that both bugs are sensitive to??

I am ranting, sorry <img src="i/expressions/face-icon-small-sad.gif" border="0">

Please reply

AJ

Littlemiss · Jul 8, 2009

So..
 
 I haven't posted in a while, but am so cranky about what happened at clinic yesterday had to get some of your thoughts.
 
 I have been feeling myself go downhill a bit over the last few weeks but stupidly put off going to the Dr. To make a long story short, I went yesterday and found that I had dropped to 70% fev1, which is really bad for me because I am usually around 85. I was sure that the Dr would want to do something agressive with such a big drop (it's the lowest I've been EVER) and was prepared for the worst (haven't been on IVs since my teens). Anyway, they didn't want me to do iv's, but try some nebs first (fair enough).
 
 My problem is this: they put me on tobra and cipro, when I could see on the computer that one of my PA strains was resistant to tobra. I have done tobra heaps before and it never works. I told them this, and that the last time I had timentin it worked really well, plus both strains of PA are senstive to timentin. So after much faffing around, I ended up with a script for tobra.
 
 I am annoyed because they won't listen, but I really want to know from you all if it is normal to Rx something that one bug is resistant to, wouldn't it make much more sense to Rx abx that both bugs are sensitive to??
 
 I am ranting, sorry <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
 Please reply
 
 AJ

ladybug · Jul 8, 2009

Hey, AJ...

Sorry you're stressing over this. I stress over this kind of stuff a lot myself so kinda know what you're going through. My docs always try combos of meds that are intermittant or resistant since I'm allergic to lots of stuff. IMO, I should be desensitized so they can USE the stuff I'm allergic (but sensitive) to, yet they have never even mentioned this. But, I digress...

Basically, I assume you're referring to TOBI, which is the inhaled form of tobra? If you're starting with nebs? I am under the understanding that even when we are resistant to something via IV abx, we are often rx'd the nebbed form. They believe you are still sensitive to it or are hoping will get some relief from it. That's what I've been told. I also know you're very very limited in nebbed abx right now (colistyn and TOBI are the only two currently on the market, correct?) So, maybe he's just trying that to see if you perk up and if not, they'll go the next route with IV abx that you are sensitive to.

This is all just what I've heard though. As far as TOBI, I think in order to have consistent results, they do it in cycles of 28 days on/off to PREVENT infection, not just when an infection starts. Someone correct me if I'm wrong... I haven't been on it in a few years.

For me, I had an adverse reaction to TOBI nebbed form, but can tolerate tobra IV abx. For this reason, we stopped TOBI and started colistyn and I honestly don't tell a difference from being on or off it, but its worth it preventatively for me to just do it in cycles in case it IS doing something I'm not aware of.

Anyway, sorry for the long answer... I hope you get some more educated answers from others. There are many who know more about resistance, etc. than I.

Best wishes!

ladybug · Jul 8, 2009

Hey, AJ...

Sorry you're stressing over this. I stress over this kind of stuff a lot myself so kinda know what you're going through. My docs always try combos of meds that are intermittant or resistant since I'm allergic to lots of stuff. IMO, I should be desensitized so they can USE the stuff I'm allergic (but sensitive) to, yet they have never even mentioned this. But, I digress...

Basically, I assume you're referring to TOBI, which is the inhaled form of tobra? If you're starting with nebs? I am under the understanding that even when we are resistant to something via IV abx, we are often rx'd the nebbed form. They believe you are still sensitive to it or are hoping will get some relief from it. That's what I've been told. I also know you're very very limited in nebbed abx right now (colistyn and TOBI are the only two currently on the market, correct?) So, maybe he's just trying that to see if you perk up and if not, they'll go the next route with IV abx that you are sensitive to.

This is all just what I've heard though. As far as TOBI, I think in order to have consistent results, they do it in cycles of 28 days on/off to PREVENT infection, not just when an infection starts. Someone correct me if I'm wrong... I haven't been on it in a few years.

For me, I had an adverse reaction to TOBI nebbed form, but can tolerate tobra IV abx. For this reason, we stopped TOBI and started colistyn and I honestly don't tell a difference from being on or off it, but its worth it preventatively for me to just do it in cycles in case it IS doing something I'm not aware of.

Anyway, sorry for the long answer... I hope you get some more educated answers from others. There are many who know more about resistance, etc. than I.

Best wishes!

ladybug · Jul 8, 2009

Hey, AJ...

Sorry you're stressing over this. I stress over this kind of stuff a lot myself so kinda know what you're going through. My docs always try combos of meds that are intermittant or resistant since I'm allergic to lots of stuff. IMO, I should be desensitized so they can USE the stuff I'm allergic (but sensitive) to, yet they have never even mentioned this. But, I digress...

Basically, I assume you're referring to TOBI, which is the inhaled form of tobra? If you're starting with nebs? I am under the understanding that even when we are resistant to something via IV abx, we are often rx'd the nebbed form. They believe you are still sensitive to it or are hoping will get some relief from it. That's what I've been told. I also know you're very very limited in nebbed abx right now (colistyn and TOBI are the only two currently on the market, correct?) So, maybe he's just trying that to see if you perk up and if not, they'll go the next route with IV abx that you are sensitive to.

This is all just what I've heard though. As far as TOBI, I think in order to have consistent results, they do it in cycles of 28 days on/off to PREVENT infection, not just when an infection starts. Someone correct me if I'm wrong... I haven't been on it in a few years.

For me, I had an adverse reaction to TOBI nebbed form, but can tolerate tobra IV abx. For this reason, we stopped TOBI and started colistyn and I honestly don't tell a difference from being on or off it, but its worth it preventatively for me to just do it in cycles in case it IS doing something I'm not aware of.

Anyway, sorry for the long answer... I hope you get some more educated answers from others. There are many who know more about resistance, etc. than I.

Best wishes!

ladybug · Jul 8, 2009

Hey, AJ...

Sorry you're stressing over this. I stress over this kind of stuff a lot myself so kinda know what you're going through. My docs always try combos of meds that are intermittant or resistant since I'm allergic to lots of stuff. IMO, I should be desensitized so they can USE the stuff I'm allergic (but sensitive) to, yet they have never even mentioned this. But, I digress...

Basically, I assume you're referring to TOBI, which is the inhaled form of tobra? If you're starting with nebs? I am under the understanding that even when we are resistant to something via IV abx, we are often rx'd the nebbed form. They believe you are still sensitive to it or are hoping will get some relief from it. That's what I've been told. I also know you're very very limited in nebbed abx right now (colistyn and TOBI are the only two currently on the market, correct?) So, maybe he's just trying that to see if you perk up and if not, they'll go the next route with IV abx that you are sensitive to.

This is all just what I've heard though. As far as TOBI, I think in order to have consistent results, they do it in cycles of 28 days on/off to PREVENT infection, not just when an infection starts. Someone correct me if I'm wrong... I haven't been on it in a few years.

For me, I had an adverse reaction to TOBI nebbed form, but can tolerate tobra IV abx. For this reason, we stopped TOBI and started colistyn and I honestly don't tell a difference from being on or off it, but its worth it preventatively for me to just do it in cycles in case it IS doing something I'm not aware of.

Anyway, sorry for the long answer... I hope you get some more educated answers from others. There are many who know more about resistance, etc. than I.

Best wishes!

ladybug · Jul 8, 2009

Hey, AJ...
 
 Sorry you're stressing over this. I stress over this kind of stuff a lot myself so kinda know what you're going through. My docs always try combos of meds that are intermittant or resistant since I'm allergic to lots of stuff. IMO, I should be desensitized so they can USE the stuff I'm allergic (but sensitive) to, yet they have never even mentioned this. But, I digress...
 
 Basically, I assume you're referring to TOBI, which is the inhaled form of tobra? If you're starting with nebs? I am under the understanding that even when we are resistant to something via IV abx, we are often rx'd the nebbed form. They believe you are still sensitive to it or are hoping will get some relief from it. That's what I've been told. I also know you're very very limited in nebbed abx right now (colistyn and TOBI are the only two currently on the market, correct?) So, maybe he's just trying that to see if you perk up and if not, they'll go the next route with IV abx that you are sensitive to.
 
 This is all just what I've heard though. As far as TOBI, I think in order to have consistent results, they do it in cycles of 28 days on/off to PREVENT infection, not just when an infection starts. Someone correct me if I'm wrong... I haven't been on it in a few years.
 
 For me, I had an adverse reaction to TOBI nebbed form, but can tolerate tobra IV abx. For this reason, we stopped TOBI and started colistyn and I honestly don't tell a difference from being on or off it, but its worth it preventatively for me to just do it in cycles in case it IS doing something I'm not aware of.
 
 Anyway, sorry for the long answer... I hope you get some more educated answers from others. There are many who know more about resistance, etc. than I.
 
 Best wishes!

Littlemiss · Jul 8, 2009

Thanks for replying Sonia. Are you in the USA? At my clinic (in Australia) we only seem to use tobra/tobi for exascerbations, but we also neb timentin, gentamycin and lots of others. Timentin is unpleasant in the neb, but seems to work well for me, so don't know why they won't use it when I'm sensitive to it.

I have noticed that most people on the forum seem to do TOBI cycles, not sure if this is just not done in Australia or just not at my centre. Truth be told I am a bit disillusioned with my centre at the moment, they don't seem to be very up on new treatments, like TOBI cycles and hypertonic saline. I asked my Dr about VX-770 (I have G551D) and he han't even heard about it. He thoughtit 'sounded like hypertonic saline' and just dismissed, he even told by brother w CF that he wasn't G551D even though it's right there in the file....

Ranting again, sorry...

AJ

Littlemiss · Jul 8, 2009

Thanks for replying Sonia. Are you in the USA? At my clinic (in Australia) we only seem to use tobra/tobi for exascerbations, but we also neb timentin, gentamycin and lots of others. Timentin is unpleasant in the neb, but seems to work well for me, so don't know why they won't use it when I'm sensitive to it.

I have noticed that most people on the forum seem to do TOBI cycles, not sure if this is just not done in Australia or just not at my centre. Truth be told I am a bit disillusioned with my centre at the moment, they don't seem to be very up on new treatments, like TOBI cycles and hypertonic saline. I asked my Dr about VX-770 (I have G551D) and he han't even heard about it. He thoughtit 'sounded like hypertonic saline' and just dismissed, he even told by brother w CF that he wasn't G551D even though it's right there in the file....

Ranting again, sorry...

AJ

Littlemiss · Jul 8, 2009

Thanks for replying Sonia. Are you in the USA? At my clinic (in Australia) we only seem to use tobra/tobi for exascerbations, but we also neb timentin, gentamycin and lots of others. Timentin is unpleasant in the neb, but seems to work well for me, so don't know why they won't use it when I'm sensitive to it.

I have noticed that most people on the forum seem to do TOBI cycles, not sure if this is just not done in Australia or just not at my centre. Truth be told I am a bit disillusioned with my centre at the moment, they don't seem to be very up on new treatments, like TOBI cycles and hypertonic saline. I asked my Dr about VX-770 (I have G551D) and he han't even heard about it. He thoughtit 'sounded like hypertonic saline' and just dismissed, he even told by brother w CF that he wasn't G551D even though it's right there in the file....

Ranting again, sorry...

AJ

Littlemiss · Jul 8, 2009

Thanks for replying Sonia. Are you in the USA? At my clinic (in Australia) we only seem to use tobra/tobi for exascerbations, but we also neb timentin, gentamycin and lots of others. Timentin is unpleasant in the neb, but seems to work well for me, so don't know why they won't use it when I'm sensitive to it.

I have noticed that most people on the forum seem to do TOBI cycles, not sure if this is just not done in Australia or just not at my centre. Truth be told I am a bit disillusioned with my centre at the moment, they don't seem to be very up on new treatments, like TOBI cycles and hypertonic saline. I asked my Dr about VX-770 (I have G551D) and he han't even heard about it. He thoughtit 'sounded like hypertonic saline' and just dismissed, he even told by brother w CF that he wasn't G551D even though it's right there in the file....

Ranting again, sorry...

AJ

Littlemiss · Jul 8, 2009

Thanks for replying Sonia. Are you in the USA? At my clinic (in Australia) we only seem to use tobra/tobi for exascerbations, but we also neb timentin, gentamycin and lots of others. Timentin is unpleasant in the neb, but seems to work well for me, so don't know why they won't use it when I'm sensitive to it.
 
 I have noticed that most people on the forum seem to do TOBI cycles, not sure if this is just not done in Australia or just not at my centre. Truth be told I am a bit disillusioned with my centre at the moment, they don't seem to be very up on new treatments, like TOBI cycles and hypertonic saline. I asked my Dr about VX-770 (I have G551D) and he han't even heard about it. He thoughtit 'sounded like hypertonic saline' and just dismissed, he even told by brother w CF that he wasn't G551D even though it's right there in the file....
 
 Ranting again, sorry...
 
 AJ

filmgirl · Jul 8, 2009

man that sucks that your doctor is so quick to dismiss you.
i guess i've been lucky, mine take the time to explain what and why they're giving me.

i'm in Canada and we're using tobi as a preventative thing. tobi is the inhaled, tobra is generally iv but they used it for inhaled before i had drug coverage for tobi, so i think that's what we're talking about here.

the only reason i can think of why your doctors are giving you tobra instead of timentin (which i've never even heard of! what is it?) is that they want to make sure you dont become resistant to it, so that for later or bigger exascerbations it can be used

good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

filmgirl · Jul 8, 2009

man that sucks that your doctor is so quick to dismiss you.
i guess i've been lucky, mine take the time to explain what and why they're giving me.

i'm in Canada and we're using tobi as a preventative thing. tobi is the inhaled, tobra is generally iv but they used it for inhaled before i had drug coverage for tobi, so i think that's what we're talking about here.

the only reason i can think of why your doctors are giving you tobra instead of timentin (which i've never even heard of! what is it?) is that they want to make sure you dont become resistant to it, so that for later or bigger exascerbations it can be used

good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

filmgirl · Jul 8, 2009

man that sucks that your doctor is so quick to dismiss you.
i guess i've been lucky, mine take the time to explain what and why they're giving me.

i'm in Canada and we're using tobi as a preventative thing. tobi is the inhaled, tobra is generally iv but they used it for inhaled before i had drug coverage for tobi, so i think that's what we're talking about here.

the only reason i can think of why your doctors are giving you tobra instead of timentin (which i've never even heard of! what is it?) is that they want to make sure you dont become resistant to it, so that for later or bigger exascerbations it can be used

good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

filmgirl · Jul 8, 2009

man that sucks that your doctor is so quick to dismiss you.
i guess i've been lucky, mine take the time to explain what and why they're giving me.

i'm in Canada and we're using tobi as a preventative thing. tobi is the inhaled, tobra is generally iv but they used it for inhaled before i had drug coverage for tobi, so i think that's what we're talking about here.

the only reason i can think of why your doctors are giving you tobra instead of timentin (which i've never even heard of! what is it?) is that they want to make sure you dont become resistant to it, so that for later or bigger exascerbations it can be used

good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

filmgirl · Jul 8, 2009

man that sucks that your doctor is so quick to dismiss you.
 i guess i've been lucky, mine take the time to explain what and why they're giving me.
 
 i'm in Canada and we're using tobi as a preventative thing. tobi is the inhaled, tobra is generally iv but they used it for inhaled before i had drug coverage for tobi, so i think that's what we're talking about here.
 
 the only reason i can think of why your doctors are giving you tobra instead of timentin (which i've never even heard of! what is it?) is that they want to make sure you dont become resistant to it, so that for later or bigger exascerbations it can be used
 
 good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

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