I've been off tobi for about six months do to the fact that it irritates my lungs and makes me short of breath. For 3-4 years I was fine w/ tobi but this started up a couple years ago. I was wondering, has anyone else had a similar experience? Also, I'm thinking of trying the tobi again, having been off for 6 months. Has anyone stopped because of irritation and restarted successfully with no problems? It used to work well for me so I would like to try it again?
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Tobi question
- Thread starter anonymous
- Start date
thelizardqueen
New member
I've been off and on Tobra now for the past 10 years, and have never had a problem with it. I've been off it now for close to 2 years, but my doc has just recently put me on it again one month on, one off. I notice now that I'm short of breath when I use it, and my lungs get irritated. But this is from Tobra. I'm wondering if I should switch to TOBI? I've never used the TOBI before.
i actually just received a letter from my hospital about the tobi powder and a clinical trial for it. wouldn't it be great to have it in inhaler form!
as for me, tobi has always caused a sort of tightening in my chest and i really don't like taking it. it was even worse back in the day when i nebbed the injectable tobra.
as for me, tobi has always caused a sort of tightening in my chest and i really don't like taking it. it was even worse back in the day when i nebbed the injectable tobra.
I am on the on one month off one month cycles to keep my psuedo in check...I too find that it irritates my lungs to some extent and definitely makes me cough. I don't get short of breath...that would be hard to tell with me anyways because a machine already breathes for me. I will tell you, one good thing about the vent is that when I nebulize those icky meds, ,I don't taste them! <img src="i/expressions/face-icon-small-wink.gif" border="0">
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
blindhearted
New member
I have been doing tobi for years now, on a month and off a month, since it came out I believe. I've noticed the more I use Tobi the harder it is on me. It causes my lungs to get very irritated. Sometimes I do have shortness of breathe, I noticed this last month but not with every dose. I have not stopped taking tobi for a long period of time like you, but last month I was on a week and had to stop for two weeks due to irritation. It was so bad, I was not able to inhale any medication due to coughing from irritation. Once I started back I was able to complete my month with less problems. Since last month was so bad, I have taken 1 and a half to two months off. I wanted to see if an extended break would help anything.
coltsfan715
New member
Hey there,
I had problems like this when I first started taking TOBI in high school. Honestly I never finished a complete month (I was doing it 1 month on 1 month off). I would be on it for about 2 weeks and then I would start coughing up blood, so I just stopped and waiting till the next month to see if it got better cause I would tell my docs and they would say oh it is fine.
When I turned 20 I was taken off of it completely because of the blood thing. Then about 7-8 months ago I tried taking it again, after a few years off of it. I did great with it after the hiatus - minimal coughing and irritation and no blood. It actually cleared my culture of the Psuedo for a few months which was nice. They had me stop taking it after 1 month of use because the Psuedo was gone at the time and they didn't want me to continue taking it if Psuedo wasn't present. I just started TOBI again yesterday because Psuedo was present again in my last culture. We will see how it goes this time.
Lindsey
I had problems like this when I first started taking TOBI in high school. Honestly I never finished a complete month (I was doing it 1 month on 1 month off). I would be on it for about 2 weeks and then I would start coughing up blood, so I just stopped and waiting till the next month to see if it got better cause I would tell my docs and they would say oh it is fine.
When I turned 20 I was taken off of it completely because of the blood thing. Then about 7-8 months ago I tried taking it again, after a few years off of it. I did great with it after the hiatus - minimal coughing and irritation and no blood. It actually cleared my culture of the Psuedo for a few months which was nice. They had me stop taking it after 1 month of use because the Psuedo was gone at the time and they didn't want me to continue taking it if Psuedo wasn't present. I just started TOBI again yesterday because Psuedo was present again in my last culture. We will see how it goes this time.
Lindsey
Hi! I developed a terrible lung irritation about seven years ago after inhaling TOBI for a few weeks..I had always done the normal tobra and had never had a problem...then whammy Tobi, and then my lungs went hyper-reactive to EVERYTHING.....I tried inhaling glutathione which is supposed to help with reactive airway disease and of, course, I couldn't do that either. Then I began doing a little research about sugar, yeast and inflamation....I used to think people were nuts when they told me diet had a lot to do with my illness...idiots. Anyway, it was concluded by an infectious disease guy that I had yeast everywhere....even though it did not show up in cultures...he put me on this killer anti-fungal called v-fend. I was on it three weeks and for the first time in seven years I HAD NO ASTHMA....or reactive air-way disease. That is when I began to believe in the BALANCE of the body. I went on this diet called the perricone promise...an anti-inflammatory diet....guys this has changed my life!!!!! I thought I would lose weight because you aren't eating as much, but instead I gained weight. Within five days, a wart on my foot went away completely....i had it cut out 2 times before and finally the doc said, "forget it...it is like 1000 on your bodies most important fight list" Take away the sugar diet and my body turned into a fighting machine....within 10 days I was coughing up plugs as hard as rocks...my pft's increased to where they were 7 years before.
I am now able to inhale glutathione, regular tobra but not TOBI. Whenever I inhale TOBI I get a CRAZY yeast issue in my throat and mouth...even though I still, thank you Lord, do not culture it in my sputum. I really believe glutathione, diet and probiotics have helped change my health for the better. Of course, I do have some mucoid PA and a lovely little mycobacterium.....but, thankfully, when I eat the anti-inflamation diet-I never have asthma...my docs are kinda amazed.
Oh yeah, I don't have to take ANY insulin if I stay on the diet. My hemoglobin A1c went from 6.3 on insulin to 5.4 without it. kinda cool
mandy 33/cf/cfrd
I am now able to inhale glutathione, regular tobra but not TOBI. Whenever I inhale TOBI I get a CRAZY yeast issue in my throat and mouth...even though I still, thank you Lord, do not culture it in my sputum. I really believe glutathione, diet and probiotics have helped change my health for the better. Of course, I do have some mucoid PA and a lovely little mycobacterium.....but, thankfully, when I eat the anti-inflamation diet-I never have asthma...my docs are kinda amazed.
Oh yeah, I don't have to take ANY insulin if I stay on the diet. My hemoglobin A1c went from 6.3 on insulin to 5.4 without it. kinda cool
mandy 33/cf/cfrd
thelizardqueen
New member
Mandy - you've got me intrigued about this diet of yours. Are you saying that asthma and need for insulin went away by this diet? Do you have any literature on it? Maybe some internet links or something?
hey! yes, that is exactly what I am saying. The doctors name is Nicholas Perricone and I saw him on Oprah....talking about micro-inflamation and skin. I thought it seemd intriguing since we have an inflammatory disease...but I was really skeptical because i didn't want to screw with my weight.
I bought the book called the Perricone Promise...he is a legitimate doc-researcher at Yale and Michigan. so I thought , what the heck? He is very informative and then offers a thrity day diet to follow in the back with recipes....no sugar, processed foods, lots of nuts, fish veggies....and nut butters. To make sure the calories were enough I always increased my portion size. Anyway, the first day I had low blood sugar all day and felt like crap...so the next day I lowered my NPH from 25 to 12 units ( I can't take lantas I am allergic). So on Tuesady, I continued to have low blood sugar so I went to seven units on Wednesday. After that I was like, this is still too much and I thought I would jsut do humalog with meals. Come to find out, with the diet and my morning workout and jsut didn't need it. The diet is hard to follow especially since we are told to eat like crap fom day one...but i got used to eating healthy and I feel tons better. When I fall of off the wagon and eat pasta...which I never do anymore...I have to take insulin because my body is like what the heck?
I would encourage you to buy the book!!! If nothing else the research alone is enough to make you consider how your diet can affect your inflamation.
mandy
ps my husband cannot prasie this book enough. the transformation in my health in five days was miraculous
I bought the book called the Perricone Promise...he is a legitimate doc-researcher at Yale and Michigan. so I thought , what the heck? He is very informative and then offers a thrity day diet to follow in the back with recipes....no sugar, processed foods, lots of nuts, fish veggies....and nut butters. To make sure the calories were enough I always increased my portion size. Anyway, the first day I had low blood sugar all day and felt like crap...so the next day I lowered my NPH from 25 to 12 units ( I can't take lantas I am allergic). So on Tuesady, I continued to have low blood sugar so I went to seven units on Wednesday. After that I was like, this is still too much and I thought I would jsut do humalog with meals. Come to find out, with the diet and my morning workout and jsut didn't need it. The diet is hard to follow especially since we are told to eat like crap fom day one...but i got used to eating healthy and I feel tons better. When I fall of off the wagon and eat pasta...which I never do anymore...I have to take insulin because my body is like what the heck?
I would encourage you to buy the book!!! If nothing else the research alone is enough to make you consider how your diet can affect your inflamation.
mandy
ps my husband cannot prasie this book enough. the transformation in my health in five days was miraculous
and yes, my asthma went completely away...of course, I believe oral glutathione helped with that as well. But like I said, I could not inhale anything and now I can.....plus, when I sneak on the diet and don't mention it to my matt, he can hear me cough and say, "that is your inflamation cough" It is truly amazing the difference. He also says when I sleep I never have crackling sounds anymore..just deep breaths and my heart rate is 70-75 with pulse ox at 98.
I probably should have posted this under diet rather than TOBI..is there anyway to copy it?
mandy cf/cfrd/33
I probably should have posted this under diet rather than TOBI..is there anyway to copy it?
mandy cf/cfrd/33
thelizardqueen
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
and yes, my asthma went completely away...of course, I believe oral glutathione helped with that as well. But like I said, I could not inhale anything and now I can.....plus, when I sneak on the diet and don't mention it to my matt, he can hear me cough and say, "that is your inflamation cough" It is truly amazing the difference. He also says when I sleep I never have crackling sounds anymore..just deep breaths and my heart rate is 70-75 with pulse ox at 98.
I probably should have posted this under diet rather than TOBI..is there anyway to copy it?
mandy cf/cfrd/33</end quote></div>
Mandy - if you don't mind my asking - in regards to the diet, were you able to maintain your weight? Did you lose or gain? Do you take any other supplements or vitamins? I'm definitly going to check out the book out of curiosity.
and yes, my asthma went completely away...of course, I believe oral glutathione helped with that as well. But like I said, I could not inhale anything and now I can.....plus, when I sneak on the diet and don't mention it to my matt, he can hear me cough and say, "that is your inflamation cough" It is truly amazing the difference. He also says when I sleep I never have crackling sounds anymore..just deep breaths and my heart rate is 70-75 with pulse ox at 98.
I probably should have posted this under diet rather than TOBI..is there anyway to copy it?
mandy cf/cfrd/33</end quote></div>
Mandy - if you don't mind my asking - in regards to the diet, were you able to maintain your weight? Did you lose or gain? Do you take any other supplements or vitamins? I'm definitly going to check out the book out of curiosity.
hey liz-
my first week I did nothing but the diet...i followed it implicitly. randomly, i had my pulmonoligist appointment 10 days after starting it....he was impressed and pleased with my lung function...but, he is never pleased with my weight. I had lost about a half pound from the last time i was in, so he encouraged me to do a supplement....in sticking with my concerns (sugar, processing food, chemical additives that can lead to inflamation) he asked me to go to whole foods and ask for an all natural weight gainer....which I did. Interestingly, I only used one scoop a day in my morning yogart smoothie and my weight was just fine. I am very hard-headed and he knows that I am going to do something that I feel like is helping me....even if it is not the normal plan of attack. i went back one month later for routine bloodwork and my a1c was so much better and my weight was holding so he encourages the diet for me. I will say...in my opinion...I would be happier if I could gain an extra five lbs...but eveytime I stray off the diet I have asthma issues. I got sick a year ago and he wanted to put me on ivs in the hospital....he asked if I stayed at home would I better be able to stick to the diet....yeah! so, he let me do at home ivs just to stay with the diet. and of course, the poop issues are gone. I haven't had a stomach ache in one year and my poop always sinks!!!!
I saw your post about a weight gain shake and I was like wow!!!! that has to put on great weight...but for me, i just have to go a different way.
my belief is that if you can stick to the diet for 10 days (obviously increasing the portion sizes and adding a little extra nut butter here and there) you will be amazed
I know a man with 3 cf girls and he read the book and found the science behind it convincing...his problem was it id HARD to stay on it. and it is.
as for other supplements...I take a food based vitamin...none of that centrum stuff for me. synthetic chemicals are not easily assimilated in a good gut..let alone one that has inflamation and absorption problems
one last thing....the book preaches the importance of good flora. I always thought it sounded important, but now I am convinced. I take probiotics 3 times a day....I take that primal defense....i am sure there are other good ones on the market, but i just chose that one
mandy 33 cfrd/cf
i hope all of this helps
my first week I did nothing but the diet...i followed it implicitly. randomly, i had my pulmonoligist appointment 10 days after starting it....he was impressed and pleased with my lung function...but, he is never pleased with my weight. I had lost about a half pound from the last time i was in, so he encouraged me to do a supplement....in sticking with my concerns (sugar, processing food, chemical additives that can lead to inflamation) he asked me to go to whole foods and ask for an all natural weight gainer....which I did. Interestingly, I only used one scoop a day in my morning yogart smoothie and my weight was just fine. I am very hard-headed and he knows that I am going to do something that I feel like is helping me....even if it is not the normal plan of attack. i went back one month later for routine bloodwork and my a1c was so much better and my weight was holding so he encourages the diet for me. I will say...in my opinion...I would be happier if I could gain an extra five lbs...but eveytime I stray off the diet I have asthma issues. I got sick a year ago and he wanted to put me on ivs in the hospital....he asked if I stayed at home would I better be able to stick to the diet....yeah! so, he let me do at home ivs just to stay with the diet. and of course, the poop issues are gone. I haven't had a stomach ache in one year and my poop always sinks!!!!
I saw your post about a weight gain shake and I was like wow!!!! that has to put on great weight...but for me, i just have to go a different way.
my belief is that if you can stick to the diet for 10 days (obviously increasing the portion sizes and adding a little extra nut butter here and there) you will be amazed
I know a man with 3 cf girls and he read the book and found the science behind it convincing...his problem was it id HARD to stay on it. and it is.
as for other supplements...I take a food based vitamin...none of that centrum stuff for me. synthetic chemicals are not easily assimilated in a good gut..let alone one that has inflamation and absorption problems
one last thing....the book preaches the importance of good flora. I always thought it sounded important, but now I am convinced. I take probiotics 3 times a day....I take that primal defense....i am sure there are other good ones on the market, but i just chose that one
mandy 33 cfrd/cf
i hope all of this helps