OK science people

I

IG

Guest
Probably not applicable but..
Even if you weren't resistant to tobi they probably wouldn't put you on it anyway since you are breastfeeding and tobi has been known to cause hearing loss.

"PREGNANCY and BREAST-FEEDING: Tobi Solution has been shown to cause harm to the fetus. If you think you may be pregnant, contact your doctor. You will need to discuss the benefits and risks of using Tobi Solution while you are pregnant. It is not known if Tobi Solution is found in breast milk after inhalation. Do not breast-feed while taking Tobi Solution." <a target=_blank class=ftalternatingbarlinklarge href="http://www.drugs.com/cdi/tobi_solution.html">http://www.drugs.com/cdi/tobi_solution.html</a>
 
I

IG

Guest
Probably not applicable but..
Even if you weren't resistant to tobi they probably wouldn't put you on it anyway since you are breastfeeding and tobi has been known to cause hearing loss.

"PREGNANCY and BREAST-FEEDING: Tobi Solution has been shown to cause harm to the fetus. If you think you may be pregnant, contact your doctor. You will need to discuss the benefits and risks of using Tobi Solution while you are pregnant. It is not known if Tobi Solution is found in breast milk after inhalation. Do not breast-feed while taking Tobi Solution." <a target=_blank class=ftalternatingbarlinklarge href="http://www.drugs.com/cdi/tobi_solution.html">http://www.drugs.com/cdi/tobi_solution.html</a>
 

JustDucky

New member
As others have said, you could have easily picked up a strain of pseudo that was already resistant to tobra in a clinic or wherever. I am sorry about your predicament right now...it sucks when you are limited on what you can take.

Sakasuka is right about neb TOBI, the way my doc explained it as well as what I have read is that because the labs show resistance to tobra doesn't mean that it won't be helped by TOBI. TOBI is delivered in much higher concentrations directly to the lungs without too much systemic absorbtion. If you take tobra via an IV, you take a much smaller dose because tobra is toxic to many organs if the levels are too high, that's why the frequent blood draws. When I look at my sensitivities, I always look at the MIC (Minimum inhibatory concentration, or the minimum amount of the drug needed to reduce counts by 90%- I think...have to look this one up to make sure I have it right, someone correct me if it is incorrect). I am always resistant to tobra, but TOBI is given in such high concentrations that it might overcome my MIC value, which is what the docs hope for. My doc looks at that number (MIC) to determine whether TOBI might be helpful even if I am resistant. (By the way, it does help drop my PA colonies, so it must be working!) Hopefully the docs will come up with something that is safe for the baby. Also look into the synergy idea as well(combining antibiotics in a way such that they become much more potent than if they wer used alone)....sakasuka and Rami sure know their stuff!
My thoughts are with you, Hugs Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JustDucky

New member
As others have said, you could have easily picked up a strain of pseudo that was already resistant to tobra in a clinic or wherever. I am sorry about your predicament right now...it sucks when you are limited on what you can take.

Sakasuka is right about neb TOBI, the way my doc explained it as well as what I have read is that because the labs show resistance to tobra doesn't mean that it won't be helped by TOBI. TOBI is delivered in much higher concentrations directly to the lungs without too much systemic absorbtion. If you take tobra via an IV, you take a much smaller dose because tobra is toxic to many organs if the levels are too high, that's why the frequent blood draws. When I look at my sensitivities, I always look at the MIC (Minimum inhibatory concentration, or the minimum amount of the drug needed to reduce counts by 90%- I think...have to look this one up to make sure I have it right, someone correct me if it is incorrect). I am always resistant to tobra, but TOBI is given in such high concentrations that it might overcome my MIC value, which is what the docs hope for. My doc looks at that number (MIC) to determine whether TOBI might be helpful even if I am resistant. (By the way, it does help drop my PA colonies, so it must be working!) Hopefully the docs will come up with something that is safe for the baby. Also look into the synergy idea as well(combining antibiotics in a way such that they become much more potent than if they wer used alone)....sakasuka and Rami sure know their stuff!
My thoughts are with you, Hugs Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JustDucky

New member
As others have said, you could have easily picked up a strain of pseudo that was already resistant to tobra in a clinic or wherever. I am sorry about your predicament right now...it sucks when you are limited on what you can take.

Sakasuka is right about neb TOBI, the way my doc explained it as well as what I have read is that because the labs show resistance to tobra doesn't mean that it won't be helped by TOBI. TOBI is delivered in much higher concentrations directly to the lungs without too much systemic absorbtion. If you take tobra via an IV, you take a much smaller dose because tobra is toxic to many organs if the levels are too high, that's why the frequent blood draws. When I look at my sensitivities, I always look at the MIC (Minimum inhibatory concentration, or the minimum amount of the drug needed to reduce counts by 90%- I think...have to look this one up to make sure I have it right, someone correct me if it is incorrect). I am always resistant to tobra, but TOBI is given in such high concentrations that it might overcome my MIC value, which is what the docs hope for. My doc looks at that number (MIC) to determine whether TOBI might be helpful even if I am resistant. (By the way, it does help drop my PA colonies, so it must be working!) Hopefully the docs will come up with something that is safe for the baby. Also look into the synergy idea as well(combining antibiotics in a way such that they become much more potent than if they wer used alone)....sakasuka and Rami sure know their stuff!
My thoughts are with you, Hugs Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

thefrogprincess

New member
REsistance is exactly why they are trying to cut down on giving people unnecessary antibiotics. Its really hard to say where you picked this up. I remember when Tobi first came out, my doctors told us that we had to try to keep it out of the general population. We were supposed to do it in our rooms with the door shut and not do it with anyone who was in the house who didn't live there. It was years before I ever used it again and the doctors didn't say anything about sequestering myself with it. I do anyway.
 

thefrogprincess

New member
REsistance is exactly why they are trying to cut down on giving people unnecessary antibiotics. Its really hard to say where you picked this up. I remember when Tobi first came out, my doctors told us that we had to try to keep it out of the general population. We were supposed to do it in our rooms with the door shut and not do it with anyone who was in the house who didn't live there. It was years before I ever used it again and the doctors didn't say anything about sequestering myself with it. I do anyway.
 

thefrogprincess

New member
REsistance is exactly why they are trying to cut down on giving people unnecessary antibiotics. Its really hard to say where you picked this up. I remember when Tobi first came out, my doctors told us that we had to try to keep it out of the general population. We were supposed to do it in our rooms with the door shut and not do it with anyone who was in the house who didn't live there. It was years before I ever used it again and the doctors didn't say anything about sequestering myself with it. I do anyway.
 

LauraLou

New member
Just to throw a spanner in the works.... <img src="i/expressions/face-icon-small-wink.gif" border="0"> </br></br></br></br>I was recently told by one of my CF consultants that sputum culture results aren't really reliable when it comes down to distinguishing between antibiotics that the bacteria are resistant to and those which they are sensitive to. She said that although lab conditions are made as sterile as possible, the antibiotics and bacteria can react completely differently in the lungs, implying that lab results are virtually useless. The only way to tell whether an antibiotic will work is to <b>try</b> it. Since then, I have been put on IV antibiotics that I've supposedly been resistant to and they've worked just as well.
 

LauraLou

New member
Just to throw a spanner in the works.... <img src="i/expressions/face-icon-small-wink.gif" border="0"> </br></br></br></br>I was recently told by one of my CF consultants that sputum culture results aren't really reliable when it comes down to distinguishing between antibiotics that the bacteria are resistant to and those which they are sensitive to. She said that although lab conditions are made as sterile as possible, the antibiotics and bacteria can react completely differently in the lungs, implying that lab results are virtually useless. The only way to tell whether an antibiotic will work is to <b>try</b> it. Since then, I have been put on IV antibiotics that I've supposedly been resistant to and they've worked just as well.
 

LauraLou

New member
Just to throw a spanner in the works.... <img src="i/expressions/face-icon-small-wink.gif" border="0"> </br></br></br></br>I was recently told by one of my CF consultants that sputum culture results aren't really reliable when it comes down to distinguishing between antibiotics that the bacteria are resistant to and those which they are sensitive to. She said that although lab conditions are made as sterile as possible, the antibiotics and bacteria can react completely differently in the lungs, implying that lab results are virtually useless. The only way to tell whether an antibiotic will work is to <b>try</b> it. Since then, I have been put on IV antibiotics that I've supposedly been resistant to and they've worked just as well.
 

EnergyGal

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

Can you not only increase the number of treatments, but increase the amount of time and the pressure? Think Amy posted in her Warwick blog about using as much pressure as one can handle.</end quote></div>



I was referring to more frequent use of the vest therapy or CPT (aka chest physiotherapy) When I increased my physio treatments, I stayed healthier and avoided antibiotics.

When I was diagnosed, doctors told CF patients to use antibiotics daily. When I turned thirty, I stopped taking my antibiotics daily (that was my choice) and told my doctors when you think I need them, I will take them. My lungs cleared up. I believe the doctors believed that using antibiotics daily was the answer for cf therapy. Today they only use antibiotics as needed.
 

EnergyGal

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

Can you not only increase the number of treatments, but increase the amount of time and the pressure? Think Amy posted in her Warwick blog about using as much pressure as one can handle.</end quote></div>



I was referring to more frequent use of the vest therapy or CPT (aka chest physiotherapy) When I increased my physio treatments, I stayed healthier and avoided antibiotics.

When I was diagnosed, doctors told CF patients to use antibiotics daily. When I turned thirty, I stopped taking my antibiotics daily (that was my choice) and told my doctors when you think I need them, I will take them. My lungs cleared up. I believe the doctors believed that using antibiotics daily was the answer for cf therapy. Today they only use antibiotics as needed.
 

EnergyGal

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

Can you not only increase the number of treatments, but increase the amount of time and the pressure? Think Amy posted in her Warwick blog about using as much pressure as one can handle.</end quote></div>



I was referring to more frequent use of the vest therapy or CPT (aka chest physiotherapy) When I increased my physio treatments, I stayed healthier and avoided antibiotics.

When I was diagnosed, doctors told CF patients to use antibiotics daily. When I turned thirty, I stopped taking my antibiotics daily (that was my choice) and told my doctors when you think I need them, I will take them. My lungs cleared up. I believe the doctors believed that using antibiotics daily was the answer for cf therapy. Today they only use antibiotics as needed.
 

Ratatosk

Administrator
Staff member
That's what I meant -- increasing CPT or the vest -- when Max has gotten a cough, his doctor has told us to "beat it out of him. Increase the number of treatments, increase the amount of time. We normally do 3 cpt/vest treatments a day with nebs. If he's a little under the weather, we do another treatment in the middle of the night -- if it's on weekends, we add another during the day and middle of the night.

Plus I seem to recall with amy's blogs about her warwick appointment, to increase the pressure on the vest to as much as you can handle. Correct me if I'm wrong.
 

Ratatosk

Administrator
Staff member
That's what I meant -- increasing CPT or the vest -- when Max has gotten a cough, his doctor has told us to "beat it out of him. Increase the number of treatments, increase the amount of time. We normally do 3 cpt/vest treatments a day with nebs. If he's a little under the weather, we do another treatment in the middle of the night -- if it's on weekends, we add another during the day and middle of the night.

Plus I seem to recall with amy's blogs about her warwick appointment, to increase the pressure on the vest to as much as you can handle. Correct me if I'm wrong.
 

Ratatosk

Administrator
Staff member
That's what I meant -- increasing CPT or the vest -- when Max has gotten a cough, his doctor has told us to "beat it out of him. Increase the number of treatments, increase the amount of time. We normally do 3 cpt/vest treatments a day with nebs. If he's a little under the weather, we do another treatment in the middle of the night -- if it's on weekends, we add another during the day and middle of the night.

Plus I seem to recall with amy's blogs about her warwick appointment, to increase the pressure on the vest to as much as you can handle. Correct me if I'm wrong.
 
Top