What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

Not liking the TOBI..

E

ElizabethlovesChris

New member
My hubby has tried TOBI off and on for several years, but has always had problems with it causing him to have hemoptysis. Most recently he tried again in Feb. 08 and it caused a rather major bleed of pure, frothy blood so he has completely stopped taking it. We wish he could take it because of the good benefits it could provide, but the fact that he has already had 8 embolizations due to massive hemoptysis caused us to decide the risk outweighs the benefits in his case.
 
E

ElizabethlovesChris

New member
My hubby has tried TOBI off and on for several years, but has always had problems with it causing him to have hemoptysis. Most recently he tried again in Feb. 08 and it caused a rather major bleed of pure, frothy blood so he has completely stopped taking it. We wish he could take it because of the good benefits it could provide, but the fact that he has already had 8 embolizations due to massive hemoptysis caused us to decide the risk outweighs the benefits in his case.
 
E

ElizabethlovesChris

New member
My hubby has tried TOBI off and on for several years, but has always had problems with it causing him to have hemoptysis. Most recently he tried again in Feb. 08 and it caused a rather major bleed of pure, frothy blood so he has completely stopped taking it. We wish he could take it because of the good benefits it could provide, but the fact that he has already had 8 embolizations due to massive hemoptysis caused us to decide the risk outweighs the benefits in his case.
 
E

ElizabethlovesChris

New member
My hubby has tried TOBI off and on for several years, but has always had problems with it causing him to have hemoptysis. Most recently he tried again in Feb. 08 and it caused a rather major bleed of pure, frothy blood so he has completely stopped taking it. We wish he could take it because of the good benefits it could provide, but the fact that he has already had 8 embolizations due to massive hemoptysis caused us to decide the risk outweighs the benefits in his case.
 
E

ElizabethlovesChris

New member
My hubby has tried TOBI off and on for several years, but has always had problems with it causing him to have hemoptysis. Most recently he tried again in Feb. 08 and it caused a rather major bleed of pure, frothy blood so he has completely stopped taking it. We wish he could take it because of the good benefits it could provide, but the fact that he has already had 8 embolizations due to massive hemoptysis caused us to decide the risk outweighs the benefits in his case.
 
C

catboogie

New member
For all of you who have complaints about Tobi, I just wanted to say: Don't give up on it just because it affects you a certain way at a certain time. I tried Tobi a lot before I either got used to the side effects or they got better. My point is, it can be bad and then better down the road. If you have to stop, don't not consider going back to it in the future.

Right now I'm thinking of switching to Tobra, which I would be able to use in the eFlow, because the aztreonam treatment of 2 mins has me absolutely spoiled. I can't stand doing 25 mins of nebbing!
 
C

catboogie

New member
For all of you who have complaints about Tobi, I just wanted to say: Don't give up on it just because it affects you a certain way at a certain time. I tried Tobi a lot before I either got used to the side effects or they got better. My point is, it can be bad and then better down the road. If you have to stop, don't not consider going back to it in the future.

Right now I'm thinking of switching to Tobra, which I would be able to use in the eFlow, because the aztreonam treatment of 2 mins has me absolutely spoiled. I can't stand doing 25 mins of nebbing!
 
C

catboogie

New member
For all of you who have complaints about Tobi, I just wanted to say: Don't give up on it just because it affects you a certain way at a certain time. I tried Tobi a lot before I either got used to the side effects or they got better. My point is, it can be bad and then better down the road. If you have to stop, don't not consider going back to it in the future.

Right now I'm thinking of switching to Tobra, which I would be able to use in the eFlow, because the aztreonam treatment of 2 mins has me absolutely spoiled. I can't stand doing 25 mins of nebbing!
 
C

catboogie

New member
For all of you who have complaints about Tobi, I just wanted to say: Don't give up on it just because it affects you a certain way at a certain time. I tried Tobi a lot before I either got used to the side effects or they got better. My point is, it can be bad and then better down the road. If you have to stop, don't not consider going back to it in the future.

Right now I'm thinking of switching to Tobra, which I would be able to use in the eFlow, because the aztreonam treatment of 2 mins has me absolutely spoiled. I can't stand doing 25 mins of nebbing!
 
C

catboogie

New member
For all of you who have complaints about Tobi, I just wanted to say: Don't give up on it just because it affects you a certain way at a certain time. I tried Tobi a lot before I either got used to the side effects or they got better. My point is, it can be bad and then better down the road. If you have to stop, don't not consider going back to it in the future.
<br />
<br />Right now I'm thinking of switching to Tobra, which I would be able to use in the eFlow, because the aztreonam treatment of 2 mins has me absolutely spoiled. I can't stand doing 25 mins of nebbing!
 
J

JenWren

New member
I agree with Laura: As a replacement for Tobi I use the Colistin on and off every other month. It may be that the bleed was going to happen eventually due to infection and the Tobi pushed the issue along. But Tobi has made me bleed too. I will try it again sometime though cause every now and again I can use it. The sore throat is a small price to pay. Allergic is another subject. Some of these symptoms sound allergyish.

Best wishes.

JenWren<img src="i/expressions/rose.gif" border="0">
 
J

JenWren

New member
I agree with Laura: As a replacement for Tobi I use the Colistin on and off every other month. It may be that the bleed was going to happen eventually due to infection and the Tobi pushed the issue along. But Tobi has made me bleed too. I will try it again sometime though cause every now and again I can use it. The sore throat is a small price to pay. Allergic is another subject. Some of these symptoms sound allergyish.

Best wishes.

JenWren<img src="i/expressions/rose.gif" border="0">
 
J

JenWren

New member
I agree with Laura: As a replacement for Tobi I use the Colistin on and off every other month. It may be that the bleed was going to happen eventually due to infection and the Tobi pushed the issue along. But Tobi has made me bleed too. I will try it again sometime though cause every now and again I can use it. The sore throat is a small price to pay. Allergic is another subject. Some of these symptoms sound allergyish.

Best wishes.

JenWren<img src="i/expressions/rose.gif" border="0">
 
J

JenWren

New member
I agree with Laura: As a replacement for Tobi I use the Colistin on and off every other month. It may be that the bleed was going to happen eventually due to infection and the Tobi pushed the issue along. But Tobi has made me bleed too. I will try it again sometime though cause every now and again I can use it. The sore throat is a small price to pay. Allergic is another subject. Some of these symptoms sound allergyish.

Best wishes.

JenWren<img src="i/expressions/rose.gif" border="0">
 
J

JenWren

New member
I agree with Laura: As a replacement for Tobi I use the Colistin on and off every other month. It may be that the bleed was going to happen eventually due to infection and the Tobi pushed the issue along. But Tobi has made me bleed too. I will try it again sometime though cause every now and again I can use it. The sore throat is a small price to pay. Allergic is another subject. Some of these symptoms sound allergyish.
<br />
<br />Best wishes.
<br />
<br />JenWren<img src="i/expressions/rose.gif" border="0">
 
J

JenWren

New member
Some people are very allergic to Tobi . I for one will not use it if it makes me short of breath, that is a sign of bronchial spasm. Have you tried Albuterol 15 min befor doing Tobi. I have to do that or I wheeze.

JenWren
 
J

JenWren

New member
Some people are very allergic to Tobi . I for one will not use it if it makes me short of breath, that is a sign of bronchial spasm. Have you tried Albuterol 15 min befor doing Tobi. I have to do that or I wheeze.

JenWren
 
J

JenWren

New member
Some people are very allergic to Tobi . I for one will not use it if it makes me short of breath, that is a sign of bronchial spasm. Have you tried Albuterol 15 min befor doing Tobi. I have to do that or I wheeze.

JenWren
 
J

JenWren

New member
Some people are very allergic to Tobi . I for one will not use it if it makes me short of breath, that is a sign of bronchial spasm. Have you tried Albuterol 15 min befor doing Tobi. I have to do that or I wheeze.

JenWren
 
J

JenWren

New member
Some people are very allergic to Tobi . I for one will not use it if it makes me short of breath, that is a sign of bronchial spasm. Have you tried Albuterol 15 min befor doing Tobi. I have to do that or I wheeze.
<br />
<br />JenWren
 
You must log in or register to reply here.
Top