TOBI Drama

[ian25]

Hello all. Has anyone here ever developed problems with inhaled TOBI? I ask because, after 10 years of being on it with no problems and great results, it now causes me to cough up blood. I'm worried about how my lungs will react to not having it, and my doctors don't seem to have a good explanation as to what's happening. Any thoughts?

 

[ian25]

Hello all. Has anyone here ever developed problems with inhaled TOBI? I ask because, after 10 years of being on it with no problems and great results, it now causes me to cough up blood. I'm worried about how my lungs will react to not having it, and my doctors don't seem to have a good explanation as to what's happening. Any thoughts?

 

[ian25]

Hello all. Has anyone here ever developed problems with inhaled TOBI? I ask because, after 10 years of being on it with no problems and great results, it now causes me to cough up blood. I'm worried about how my lungs will react to not having it, and my doctors don't seem to have a good explanation as to what's happening. Any thoughts?

 

[Jem]

Sorry that you have coughed up blood. I know how scary that is. It is something you never get used to. Hopefully for you it will not happen again.

Are your doctors totally sure it is the Tobi that is causing the bleeding? I have never been on Tobi and have been coughing up blood on and off since I was 18 years old. That's 30 years now! Yikes! I am getting old. LOL!!!

Many times my bleeding seems to be a mystery. I can feel perfectly fine and boom!! That familiar gurgle with bleeding follows. I try to remaim calm (sometimes easier said than done), and then skip my vest and HTS treatments for a day or two (looking on the bright side it is like a mini vacation from the daily grind of treatments). Sometimes I will be put on an antibiotic depending on the amount coughed up.

I wish I could be more help to you. As you said, "doctors don't seem to have a good explanation as to what's happening"....that is because bleeding can be caused by many reasons. It is difficult at times to pin point the exact cause. Is is from an infection? irritation to the lungs? reaction to medication? convoluted or worn out blood vessel? straining cough? etc....

I hope you find the answers you need. Let us know how it is going for you.

 

[Jem]

Sorry that you have coughed up blood. I know how scary that is. It is something you never get used to. Hopefully for you it will not happen again.

Are your doctors totally sure it is the Tobi that is causing the bleeding? I have never been on Tobi and have been coughing up blood on and off since I was 18 years old. That's 30 years now! Yikes! I am getting old. LOL!!!

Many times my bleeding seems to be a mystery. I can feel perfectly fine and boom!! That familiar gurgle with bleeding follows. I try to remaim calm (sometimes easier said than done), and then skip my vest and HTS treatments for a day or two (looking on the bright side it is like a mini vacation from the daily grind of treatments). Sometimes I will be put on an antibiotic depending on the amount coughed up.

I wish I could be more help to you. As you said, "doctors don't seem to have a good explanation as to what's happening"....that is because bleeding can be caused by many reasons. It is difficult at times to pin point the exact cause. Is is from an infection? irritation to the lungs? reaction to medication? convoluted or worn out blood vessel? straining cough? etc....

I hope you find the answers you need. Let us know how it is going for you.

 

[Jem]

Sorry that you have coughed up blood. I know how scary that is. It is something you never get used to. Hopefully for you it will not happen again.

Are your doctors totally sure it is the Tobi that is causing the bleeding? I have never been on Tobi and have been coughing up blood on and off since I was 18 years old. That's 30 years now! Yikes! I am getting old. LOL!!!

Many times my bleeding seems to be a mystery. I can feel perfectly fine and boom!! That familiar gurgle with bleeding follows. I try to remaim calm (sometimes easier said than done), and then skip my vest and HTS treatments for a day or two (looking on the bright side it is like a mini vacation from the daily grind of treatments). Sometimes I will be put on an antibiotic depending on the amount coughed up.

I wish I could be more help to you. As you said, "doctors don't seem to have a good explanation as to what's happening"....that is because bleeding can be caused by many reasons. It is difficult at times to pin point the exact cause. Is is from an infection? irritation to the lungs? reaction to medication? convoluted or worn out blood vessel? straining cough? etc....

I hope you find the answers you need. Let us know how it is going for you.

 

[JazzysMom]

The fact that you have used Tobi for 10 years with no previous hemoptysis makes me ??? if its the Tobi itself. Tho it might have aggrivated something...it would seem there have to be something more there to aggrivate. Hemoptysis for me as with many never has any sure fire links. Even some of my normal triggers arent normal. I dont panic everytime now, but the anxiety definitely kicks in when I see red....LITERALLY!

 

[JazzysMom]

The fact that you have used Tobi for 10 years with no previous hemoptysis makes me ??? if its the Tobi itself. Tho it might have aggrivated something...it would seem there have to be something more there to aggrivate. Hemoptysis for me as with many never has any sure fire links. Even some of my normal triggers arent normal. I dont panic everytime now, but the anxiety definitely kicks in when I see red....LITERALLY!

 

[JazzysMom]

The fact that you have used Tobi for 10 years with no previous hemoptysis makes me ??? if its the Tobi itself. Tho it might have aggrivated something...it would seem there have to be something more there to aggrivate. Hemoptysis for me as with many never has any sure fire links. Even some of my normal triggers arent normal. I dont panic everytime now, but the anxiety definitely kicks in when I see red....LITERALLY!

 

[coltsfan715]

It is possible. I had this occur several years ago.

I had been on TOBI for a few years and then I started to notice that after about a week of being on TOBI I would cough up blood tinged and streaked sputum. It got progressively worse over a few month period and my docs never seemed to believe me. I ended up coughing up pure blood that was relieved with an albuterol and my pulmozyme treatment later that same day. I quit the TOBI on my own at that time because to me I shouldn't have been coughing up blood.

I know in my case the coughing up of blood came after only a few years of using TOBI ... maybe 2 yrs. I was usually fine after the first week and then the blood would start appearing.

My docs took me off TOBI for several years - I think I took about a 3 year break from taking it at all. Then the discussed me trying it again to see if my body could handle it. I tried it just over a year ago with no problems. I have been taking it for a year now - not exactly every other month because my docs started me on it slowly since I had problems. I have not had any problem (knock on wood) with coughing up blood since I started it again, but I do get problems with thrush now EVERY time I take it.

It is definitely possible to develop issues with any medication that you take - even if you have taken it for years. Heck I developed an allergy to Levaquin after I had been taking it for almost 2 years. Our bodies change and sometimes the slightest changes can cause problems for us.

I hope that may put your mind at ease a little. You are NOT the only person this has happened too. Trust your gut if you think it is the TOBI. Talk to your docs about it and maybe they can put you on another nebbed antibiotic - I think my docs suggested Colistin when they took me off TOBI. At the time my cultures showed resistance to Colistin so I never took it, but it may be an option for you.

Also maybe your body just needs a break for a few years. I know mine did and now I seem to be able to handle the TOBI fine - in regards to my lungs anyway.

Take Care and I hope you get the situation worked out.
Lindsey

 

[coltsfan715]

It is possible. I had this occur several years ago.

I had been on TOBI for a few years and then I started to notice that after about a week of being on TOBI I would cough up blood tinged and streaked sputum. It got progressively worse over a few month period and my docs never seemed to believe me. I ended up coughing up pure blood that was relieved with an albuterol and my pulmozyme treatment later that same day. I quit the TOBI on my own at that time because to me I shouldn't have been coughing up blood.

I know in my case the coughing up of blood came after only a few years of using TOBI ... maybe 2 yrs. I was usually fine after the first week and then the blood would start appearing.

My docs took me off TOBI for several years - I think I took about a 3 year break from taking it at all. Then the discussed me trying it again to see if my body could handle it. I tried it just over a year ago with no problems. I have been taking it for a year now - not exactly every other month because my docs started me on it slowly since I had problems. I have not had any problem (knock on wood) with coughing up blood since I started it again, but I do get problems with thrush now EVERY time I take it.

It is definitely possible to develop issues with any medication that you take - even if you have taken it for years. Heck I developed an allergy to Levaquin after I had been taking it for almost 2 years. Our bodies change and sometimes the slightest changes can cause problems for us.

I hope that may put your mind at ease a little. You are NOT the only person this has happened too. Trust your gut if you think it is the TOBI. Talk to your docs about it and maybe they can put you on another nebbed antibiotic - I think my docs suggested Colistin when they took me off TOBI. At the time my cultures showed resistance to Colistin so I never took it, but it may be an option for you.

Also maybe your body just needs a break for a few years. I know mine did and now I seem to be able to handle the TOBI fine - in regards to my lungs anyway.

Take Care and I hope you get the situation worked out.
Lindsey

 

[coltsfan715]

It is possible. I had this occur several years ago.

I had been on TOBI for a few years and then I started to notice that after about a week of being on TOBI I would cough up blood tinged and streaked sputum. It got progressively worse over a few month period and my docs never seemed to believe me. I ended up coughing up pure blood that was relieved with an albuterol and my pulmozyme treatment later that same day. I quit the TOBI on my own at that time because to me I shouldn't have been coughing up blood.

I know in my case the coughing up of blood came after only a few years of using TOBI ... maybe 2 yrs. I was usually fine after the first week and then the blood would start appearing.

My docs took me off TOBI for several years - I think I took about a 3 year break from taking it at all. Then the discussed me trying it again to see if my body could handle it. I tried it just over a year ago with no problems. I have been taking it for a year now - not exactly every other month because my docs started me on it slowly since I had problems. I have not had any problem (knock on wood) with coughing up blood since I started it again, but I do get problems with thrush now EVERY time I take it.

It is definitely possible to develop issues with any medication that you take - even if you have taken it for years. Heck I developed an allergy to Levaquin after I had been taking it for almost 2 years. Our bodies change and sometimes the slightest changes can cause problems for us.

I hope that may put your mind at ease a little. You are NOT the only person this has happened too. Trust your gut if you think it is the TOBI. Talk to your docs about it and maybe they can put you on another nebbed antibiotic - I think my docs suggested Colistin when they took me off TOBI. At the time my cultures showed resistance to Colistin so I never took it, but it may be an option for you.

Also maybe your body just needs a break for a few years. I know mine did and now I seem to be able to handle the TOBI fine - in regards to my lungs anyway.

Take Care and I hope you get the situation worked out.
Lindsey

 

[Landy]

I haven't had this particular issue with TOBI but I did take it for years & then it started to make me respressively short of breath. It took me months before I realized that I only felt this way while being on TOBI. After I quit the TOBI, I haven't had the severe SOB since.
So it is possible for problems to arise after months/years of use, in my opinion.

 

[Landy]

I haven't had this particular issue with TOBI but I did take it for years & then it started to make me respressively short of breath. It took me months before I realized that I only felt this way while being on TOBI. After I quit the TOBI, I haven't had the severe SOB since.
So it is possible for problems to arise after months/years of use, in my opinion.

 

[Landy]

I haven't had this particular issue with TOBI but I did take it for years & then it started to make me respressively short of breath. It took me months before I realized that I only felt this way while being on TOBI. After I quit the TOBI, I haven't had the severe SOB since.
So it is possible for problems to arise after months/years of use, in my opinion.

 

[ian25]

Thanks guys for being so supportive. I have proven to them that it is in fact the TOBI. I have stopped and started several times with the same results. This last time, I was off of it for 6 weeks, and 1 hour after the first treatment, it happened. During that time, I had been on a course of IVs to help with any possible infection. It seems that I have a blood vessel that just opens up when it sees TOBI (it happens in the same spot every time). Why this never happened before is a mystery.

I typically alternate months between TOBI and Colisten, so I would imagine they'll just have me stick with the Colisten for now. The problem is that I respond much better to TOBI, so losing it is going to be a problem. Maybe I'll ask about hypertonic saline when I go in.

 

[ian25]

Thanks guys for being so supportive. I have proven to them that it is in fact the TOBI. I have stopped and started several times with the same results. This last time, I was off of it for 6 weeks, and 1 hour after the first treatment, it happened. During that time, I had been on a course of IVs to help with any possible infection. It seems that I have a blood vessel that just opens up when it sees TOBI (it happens in the same spot every time). Why this never happened before is a mystery.

I typically alternate months between TOBI and Colisten, so I would imagine they'll just have me stick with the Colisten for now. The problem is that I respond much better to TOBI, so losing it is going to be a problem. Maybe I'll ask about hypertonic saline when I go in.

 

[ian25]

Thanks guys for being so supportive. I have proven to them that it is in fact the TOBI. I have stopped and started several times with the same results. This last time, I was off of it for 6 weeks, and 1 hour after the first treatment, it happened. During that time, I had been on a course of IVs to help with any possible infection. It seems that I have a blood vessel that just opens up when it sees TOBI (it happens in the same spot every time). Why this never happened before is a mystery.

I typically alternate months between TOBI and Colisten, so I would imagine they'll just have me stick with the Colisten for now. The problem is that I respond much better to TOBI, so losing it is going to be a problem. Maybe I'll ask about hypertonic saline when I go in.

 

[Jem]

Thanks for the update. Finding out that it is the TOBI causing your bleeding is wonderful. <img src="i/expressions/face-icon-small-happy.gif" border="0"> Here's hoping the Colisten will do the trick for you and you will never see red again.<img src="i/expressions/wine.gif" border="0">

I love my Hypertonic Saline! <img src="i/expressions/heart.gif" border="0"> Yes, by all means try it. I feel it really helps keep infections at bay by helping to keep my lung clearer of mucus especially when combined with the VEST treatment.


Gook luck and let us know how things are going from time to time. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[Jem]

Thanks for the update. Finding out that it is the TOBI causing your bleeding is wonderful. <img src="i/expressions/face-icon-small-happy.gif" border="0"> Here's hoping the Colisten will do the trick for you and you will never see red again.<img src="i/expressions/wine.gif" border="0">

I love my Hypertonic Saline! <img src="i/expressions/heart.gif" border="0"> Yes, by all means try it. I feel it really helps keep infections at bay by helping to keep my lung clearer of mucus especially when combined with the VEST treatment.


Gook luck and let us know how things are going from time to time. <img src="i/expressions/face-icon-small-wink.gif" border="0">