A new Tobi study drug....

K

Kelli

New member
Hey Everyone,
My clinic asked me to do a study for them regarding a 'dry' Tobi that you crush and inhale (like 4 crushed pills a day, think something kinda like Advair). It is still Tobi brand and the study lasts 6 months or so.

<b>Here's my dilemma...</b>
I just started Tobi inhaled last month and I love the way it makes me feel. I am worried that this dry Tobi won't give me the same result and I don't want to lose any ground when it comes to my PFT.

What do you think? Would you try it? I haven't done a study since I was a kid and I'm not sure how I feel about it. Any advice on studies you've done, if it was worth it or a waste of time would be a great help.

Thanks,
Kelli
 
K

Kelli

New member
Hey Everyone,
My clinic asked me to do a study for them regarding a 'dry' Tobi that you crush and inhale (like 4 crushed pills a day, think something kinda like Advair). It is still Tobi brand and the study lasts 6 months or so.

<b>Here's my dilemma...</b>
I just started Tobi inhaled last month and I love the way it makes me feel. I am worried that this dry Tobi won't give me the same result and I don't want to lose any ground when it comes to my PFT.

What do you think? Would you try it? I haven't done a study since I was a kid and I'm not sure how I feel about it. Any advice on studies you've done, if it was worth it or a waste of time would be a great help.

Thanks,
Kelli
 
K

Kelli

New member
Hey Everyone,
My clinic asked me to do a study for them regarding a 'dry' Tobi that you crush and inhale (like 4 crushed pills a day, think something kinda like Advair). It is still Tobi brand and the study lasts 6 months or so.

<b>Here's my dilemma...</b>
I just started Tobi inhaled last month and I love the way it makes me feel. I am worried that this dry Tobi won't give me the same result and I don't want to lose any ground when it comes to my PFT.

What do you think? Would you try it? I haven't done a study since I was a kid and I'm not sure how I feel about it. Any advice on studies you've done, if it was worth it or a waste of time would be a great help.

Thanks,
Kelli
 
K

Kelli

New member
Hey Everyone,
My clinic asked me to do a study for them regarding a 'dry' Tobi that you crush and inhale (like 4 crushed pills a day, think something kinda like Advair). It is still Tobi brand and the study lasts 6 months or so.

<b>Here's my dilemma...</b>
I just started Tobi inhaled last month and I love the way it makes me feel. I am worried that this dry Tobi won't give me the same result and I don't want to lose any ground when it comes to my PFT.

What do you think? Would you try it? I haven't done a study since I was a kid and I'm not sure how I feel about it. Any advice on studies you've done, if it was worth it or a waste of time would be a great help.

Thanks,
Kelli
 
K

Kelli

New member
Hey Everyone,
<br />My clinic asked me to do a study for them regarding a 'dry' Tobi that you crush and inhale (like 4 crushed pills a day, think something kinda like Advair). It is still Tobi brand and the study lasts 6 months or so.
<br />
<br /><b>Here's my dilemma...</b>
<br />I just started Tobi inhaled last month and I love the way it makes me feel. I am worried that this dry Tobi won't give me the same result and I don't want to lose any ground when it comes to my PFT.
<br />
<br />What do you think? Would you try it? I haven't done a study since I was a kid and I'm not sure how I feel about it. Any advice on studies you've done, if it was worth it or a waste of time would be a great help.
<br />
<br />Thanks,
<br />Kelli
 
L

lightNlife

New member
Being involved in clinical trials is an important part of getting new drugs on the market for us CFers. I've participated in a number of studies over the years, and haven't had a bad experience at all.

Regarding the TIP (tobramycin inhalation powder) study, I know of a few people who have done it already and liked the results. They too were new to the medication.

I think there would be benefit to the powder over the nebulized version, because with the powder you are making a concentrated effort to inhale deeply. With the nebulized version, we don't always breathe so heavily and deeply. Another benefit would be that there's far less moisture on a nebulizer that could possibly harbor some bacteria.

I say GO FOR IT! Another plus is probably that the powder won't cause the same extent of damage to the ears. (I have to wear hearing aids now thanks to TOBI)
 
L

lightNlife

New member
Being involved in clinical trials is an important part of getting new drugs on the market for us CFers. I've participated in a number of studies over the years, and haven't had a bad experience at all.

Regarding the TIP (tobramycin inhalation powder) study, I know of a few people who have done it already and liked the results. They too were new to the medication.

I think there would be benefit to the powder over the nebulized version, because with the powder you are making a concentrated effort to inhale deeply. With the nebulized version, we don't always breathe so heavily and deeply. Another benefit would be that there's far less moisture on a nebulizer that could possibly harbor some bacteria.

I say GO FOR IT! Another plus is probably that the powder won't cause the same extent of damage to the ears. (I have to wear hearing aids now thanks to TOBI)
 
L

lightNlife

New member
Being involved in clinical trials is an important part of getting new drugs on the market for us CFers. I've participated in a number of studies over the years, and haven't had a bad experience at all.

Regarding the TIP (tobramycin inhalation powder) study, I know of a few people who have done it already and liked the results. They too were new to the medication.

I think there would be benefit to the powder over the nebulized version, because with the powder you are making a concentrated effort to inhale deeply. With the nebulized version, we don't always breathe so heavily and deeply. Another benefit would be that there's far less moisture on a nebulizer that could possibly harbor some bacteria.

I say GO FOR IT! Another plus is probably that the powder won't cause the same extent of damage to the ears. (I have to wear hearing aids now thanks to TOBI)
 
L

lightNlife

New member
Being involved in clinical trials is an important part of getting new drugs on the market for us CFers. I've participated in a number of studies over the years, and haven't had a bad experience at all.

Regarding the TIP (tobramycin inhalation powder) study, I know of a few people who have done it already and liked the results. They too were new to the medication.

I think there would be benefit to the powder over the nebulized version, because with the powder you are making a concentrated effort to inhale deeply. With the nebulized version, we don't always breathe so heavily and deeply. Another benefit would be that there's far less moisture on a nebulizer that could possibly harbor some bacteria.

I say GO FOR IT! Another plus is probably that the powder won't cause the same extent of damage to the ears. (I have to wear hearing aids now thanks to TOBI)
 
L

lightNlife

New member
Being involved in clinical trials is an important part of getting new drugs on the market for us CFers. I've participated in a number of studies over the years, and haven't had a bad experience at all.
<br />
<br />Regarding the TIP (tobramycin inhalation powder) study, I know of a few people who have done it already and liked the results. They too were new to the medication.
<br />
<br />I think there would be benefit to the powder over the nebulized version, because with the powder you are making a concentrated effort to inhale deeply. With the nebulized version, we don't always breathe so heavily and deeply. Another benefit would be that there's far less moisture on a nebulizer that could possibly harbor some bacteria.
<br />
<br />I say GO FOR IT! Another plus is probably that the powder won't cause the same extent of damage to the ears. (I have to wear hearing aids now thanks to TOBI)
 
P

PeteRose

Guest
I did participate in the study. I did not make it the whole time, but it had nothing to do with the medication being dry - I should have known better I always have a bad reaction to Tobi. Try the study, if you don't like how you feel, you can always drop out of the study and go back to the regular drug. It seems like there is really not a lot you can lose, but more that you can gain.

Rosie 47 w/cf
 
P

PeteRose

Guest
I did participate in the study. I did not make it the whole time, but it had nothing to do with the medication being dry - I should have known better I always have a bad reaction to Tobi. Try the study, if you don't like how you feel, you can always drop out of the study and go back to the regular drug. It seems like there is really not a lot you can lose, but more that you can gain.

Rosie 47 w/cf
 
P

PeteRose

Guest
I did participate in the study. I did not make it the whole time, but it had nothing to do with the medication being dry - I should have known better I always have a bad reaction to Tobi. Try the study, if you don't like how you feel, you can always drop out of the study and go back to the regular drug. It seems like there is really not a lot you can lose, but more that you can gain.

Rosie 47 w/cf
 
P

PeteRose

Guest
I did participate in the study. I did not make it the whole time, but it had nothing to do with the medication being dry - I should have known better I always have a bad reaction to Tobi. Try the study, if you don't like how you feel, you can always drop out of the study and go back to the regular drug. It seems like there is really not a lot you can lose, but more that you can gain.

Rosie 47 w/cf
 
P

PeteRose

Guest
I did participate in the study. I did not make it the whole time, but it had nothing to do with the medication being dry - I should have known better I always have a bad reaction to Tobi. Try the study, if you don't like how you feel, you can always drop out of the study and go back to the regular drug. It seems like there is really not a lot you can lose, but more that you can gain.
<br />
<br />Rosie 47 w/cf
 
M

mysterygrl19

New member
Hey Kelli,
I participated in the TIP and Tobi study a few months ago. By luck of the draw, I ended up doing the regular Tobi, but I have heard great things from the people who have taken the TIP. My advice is go for it. I had to drop out of the study due to an inresolving abcess and resulting lobectomy. But all the meds and dr visits are free, plus they pay $30 a visit. Plus, if for some reason you dont like it, you are in not way obligated to finish the study.
--Heather 19 w/cf; CFRD
 
M

mysterygrl19

New member
Hey Kelli,
I participated in the TIP and Tobi study a few months ago. By luck of the draw, I ended up doing the regular Tobi, but I have heard great things from the people who have taken the TIP. My advice is go for it. I had to drop out of the study due to an inresolving abcess and resulting lobectomy. But all the meds and dr visits are free, plus they pay $30 a visit. Plus, if for some reason you dont like it, you are in not way obligated to finish the study.
--Heather 19 w/cf; CFRD
 
M

mysterygrl19

New member
Hey Kelli,
I participated in the TIP and Tobi study a few months ago. By luck of the draw, I ended up doing the regular Tobi, but I have heard great things from the people who have taken the TIP. My advice is go for it. I had to drop out of the study due to an inresolving abcess and resulting lobectomy. But all the meds and dr visits are free, plus they pay $30 a visit. Plus, if for some reason you dont like it, you are in not way obligated to finish the study.
--Heather 19 w/cf; CFRD
 
M

mysterygrl19

New member
Hey Kelli,
I participated in the TIP and Tobi study a few months ago. By luck of the draw, I ended up doing the regular Tobi, but I have heard great things from the people who have taken the TIP. My advice is go for it. I had to drop out of the study due to an inresolving abcess and resulting lobectomy. But all the meds and dr visits are free, plus they pay $30 a visit. Plus, if for some reason you dont like it, you are in not way obligated to finish the study.
--Heather 19 w/cf; CFRD
 
M

mysterygrl19

New member
Hey Kelli,
<br />I participated in the TIP and Tobi study a few months ago. By luck of the draw, I ended up doing the regular Tobi, but I have heard great things from the people who have taken the TIP. My advice is go for it. I had to drop out of the study due to an inresolving abcess and resulting lobectomy. But all the meds and dr visits are free, plus they pay $30 a visit. Plus, if for some reason you dont like it, you are in not way obligated to finish the study.
<br />--Heather 19 w/cf; CFRD
 
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