Is this normal?

O

oatmeal28

New member
Hi all,

I just wanted to get some feedback to see if this is a common experience. I was recently diagnosed at age 29, and my normal treatments were pulmozyme and the flutter. For the past two years leading up to my diagnosis I only cultured staph. Anyway my lung function had been decreasing with each visit and the last visit I went to, I cultured PA. She put me on doxocyclin(sp?), cipro and TOBI. I was feeling great the past two weeks on the meds up until yesterday. All of a sudden my chest was just so tight, all day at work I was having anxiety attacks because I felt that I was gulping for air at certain times. Once I got home from my night class I coughed up so much (more than I ever have since being diagnosed) and my chest is hurting so much. Today I had to miss work and class because I am so winded just walking around the apartment I can't imagine doing the subway. Otherwise I feel fine, I just feel like someone is stepping on my chest and it's not subsiding. Is this maybe a reaction to the meds? it's just such a sudden change in what was was feeling that it's something I am just not familiar with. My doctor is telling me to stop the TOBI for a few days, but could it be something else like a common chest cold and I am just reacting strongly to it? or is maybe the TOBI really causing it even though it gave me zero problems up until this point?

Any feedback would be great. I am seeing my doc on Fri if it stays the same I just wanted to see if this was something that was common since I am so new to CF. many thanks!
 
O

oatmeal28

New member
Hi all,

I just wanted to get some feedback to see if this is a common experience. I was recently diagnosed at age 29, and my normal treatments were pulmozyme and the flutter. For the past two years leading up to my diagnosis I only cultured staph. Anyway my lung function had been decreasing with each visit and the last visit I went to, I cultured PA. She put me on doxocyclin(sp?), cipro and TOBI. I was feeling great the past two weeks on the meds up until yesterday. All of a sudden my chest was just so tight, all day at work I was having anxiety attacks because I felt that I was gulping for air at certain times. Once I got home from my night class I coughed up so much (more than I ever have since being diagnosed) and my chest is hurting so much. Today I had to miss work and class because I am so winded just walking around the apartment I can't imagine doing the subway. Otherwise I feel fine, I just feel like someone is stepping on my chest and it's not subsiding. Is this maybe a reaction to the meds? it's just such a sudden change in what was was feeling that it's something I am just not familiar with. My doctor is telling me to stop the TOBI for a few days, but could it be something else like a common chest cold and I am just reacting strongly to it? or is maybe the TOBI really causing it even though it gave me zero problems up until this point?

Any feedback would be great. I am seeing my doc on Fri if it stays the same I just wanted to see if this was something that was common since I am so new to CF. many thanks!
 
O

oatmeal28

New member
Hi all,
<br />
<br />I just wanted to get some feedback to see if this is a common experience. I was recently diagnosed at age 29, and my normal treatments were pulmozyme and the flutter. For the past two years leading up to my diagnosis I only cultured staph. Anyway my lung function had been decreasing with each visit and the last visit I went to, I cultured PA. She put me on doxocyclin(sp?), cipro and TOBI. I was feeling great the past two weeks on the meds up until yesterday. All of a sudden my chest was just so tight, all day at work I was having anxiety attacks because I felt that I was gulping for air at certain times. Once I got home from my night class I coughed up so much (more than I ever have since being diagnosed) and my chest is hurting so much. Today I had to miss work and class because I am so winded just walking around the apartment I can't imagine doing the subway. Otherwise I feel fine, I just feel like someone is stepping on my chest and it's not subsiding. Is this maybe a reaction to the meds? it's just such a sudden change in what was was feeling that it's something I am just not familiar with. My doctor is telling me to stop the TOBI for a few days, but could it be something else like a common chest cold and I am just reacting strongly to it? or is maybe the TOBI really causing it even though it gave me zero problems up until this point?
<br />
<br />Any feedback would be great. I am seeing my doc on Fri if it stays the same I just wanted to see if this was something that was common since I am so new to CF. many thanks!
 
E

entropy

Guest
sometimes after i do tobi i notice that feel short of breath and tight in the chest area. usually after a few hours it goes away, but i definitely notice this too.
 
E

entropy

Guest
sometimes after i do tobi i notice that feel short of breath and tight in the chest area. usually after a few hours it goes away, but i definitely notice this too.
 
E

entropy

Guest
sometimes after i do tobi i notice that feel short of breath and tight in the chest area. usually after a few hours it goes away, but i definitely notice this too.
 
M

MCGrad2006

Guest
I have a horrible cold right now too...and I feel exactly as you are describing. I didn't cough up tons of junk, but my cough is so incredibly tight feeling that i fear coughing. It's not really a pain, but like someone or something is sitting on my chest when I cough. I could never have gone to work today. And it came on very quickly for me, I thought I was better yesterday but then was up half the night coughing and most of today...

I have not started Tobi yet(my pharmacy will have it tomorrow), but I guess it could cause you to feel that way.

But do know that this sort of thing is going around. A TON of people I work with are sick, as is my doctor (he sounded like he was coughing too). Be on the lookout, because it may be something, but you should be covered since you are already on meds.

Hope you feel better soon!
 
M

MCGrad2006

Guest
I have a horrible cold right now too...and I feel exactly as you are describing. I didn't cough up tons of junk, but my cough is so incredibly tight feeling that i fear coughing. It's not really a pain, but like someone or something is sitting on my chest when I cough. I could never have gone to work today. And it came on very quickly for me, I thought I was better yesterday but then was up half the night coughing and most of today...

I have not started Tobi yet(my pharmacy will have it tomorrow), but I guess it could cause you to feel that way.

But do know that this sort of thing is going around. A TON of people I work with are sick, as is my doctor (he sounded like he was coughing too). Be on the lookout, because it may be something, but you should be covered since you are already on meds.

Hope you feel better soon!
 
M

MCGrad2006

Guest
I have a horrible cold right now too...and I feel exactly as you are describing. I didn't cough up tons of junk, but my cough is so incredibly tight feeling that i fear coughing. It's not really a pain, but like someone or something is sitting on my chest when I cough. I could never have gone to work today. And it came on very quickly for me, I thought I was better yesterday but then was up half the night coughing and most of today...
<br />
<br />I have not started Tobi yet(my pharmacy will have it tomorrow), but I guess it could cause you to feel that way.
<br />
<br />But do know that this sort of thing is going around. A TON of people I work with are sick, as is my doctor (he sounded like he was coughing too). Be on the lookout, because it may be something, but you should be covered since you are already on meds.
<br />
<br />Hope you feel better soon!
 
R

running4life

New member
I use to get tightness in my chest from TOBI and my doctor no longer prescribes it. I use Cayston instead. Also use Albuterol to help with the tightness. You may want to consider asking your doctor about that. I use to take TOBI just fine and it seemed that I noticed tightness in my chest often and it was very painful and my doctor thought it was the TOBI causing that and sure enough I feel MUCH better without the TOBI.
 
R

running4life

New member
I use to get tightness in my chest from TOBI and my doctor no longer prescribes it. I use Cayston instead. Also use Albuterol to help with the tightness. You may want to consider asking your doctor about that. I use to take TOBI just fine and it seemed that I noticed tightness in my chest often and it was very painful and my doctor thought it was the TOBI causing that and sure enough I feel MUCH better without the TOBI.
 
R

running4life

New member
I use to get tightness in my chest from TOBI and my doctor no longer prescribes it. I use Cayston instead. Also use Albuterol to help with the tightness. You may want to consider asking your doctor about that. I use to take TOBI just fine and it seemed that I noticed tightness in my chest often and it was very painful and my doctor thought it was the TOBI causing that and sure enough I feel MUCH better without the TOBI.
 
O

oatmeal28

New member
Thank you everyone for your input! It makes me feel a lot better<img src="i/expressions/face-icon-small-smile.gif" border="0">
I have been off the TOBI for two full days and I feel almost back to normal (with the exception of a deeper cough). It was so strange that it came on so sudden b/c I was on it for 14 days with no issues. I see my doctor next week and hopefully I can get on something else if the PA is still there.
 
O

oatmeal28

New member
Thank you everyone for your input! It makes me feel a lot better<img src="i/expressions/face-icon-small-smile.gif" border="0">
I have been off the TOBI for two full days and I feel almost back to normal (with the exception of a deeper cough). It was so strange that it came on so sudden b/c I was on it for 14 days with no issues. I see my doctor next week and hopefully I can get on something else if the PA is still there.
 
O

oatmeal28

New member
Thank you everyone for your input! It makes me feel a lot better<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />I have been off the TOBI for two full days and I feel almost back to normal (with the exception of a deeper cough). It was so strange that it came on so sudden b/c I was on it for 14 days with no issues. I see my doctor next week and hopefully I can get on something else if the PA is still there.
 
S

sunflower

New member
I would stop taking it. Let me tell you my story. I have been taking it four months now after the last two treatments and always two weeks into it I get sick but this tine is nothing like the last it was bad then but worse now. I am so I'll been in bed since Friday coughing, vomiting on and off, loss of appetite, tightness in the chest OMG! Dreadful it was. Then on Thursday midnight coughing up blood bad I couldn't believe it apprix 50mls now that a lot for me. I rang the hospital next day and I know tobi did this to me and I need IV's next week. I won't be taking it again EVEr n pray we get Cayston in Ireland soon. My advice is you know your own body n you know yourself if Tobi has caused you problems. Stop it completely or take two months off it, is your IGe level down? Tobi brought mine down a good bit. Good by Tobi n hurray up Tobi and get here.
Take care
I reply already to someone else who is having problems n CPU my reply I just thought it might help you. Hope things will settle down for you.

Sunflower
40yrs old
ABPA,
Asthma,
Bronchi
Psudemonas and multi resistant bummer.
Fiancé a carrier of CF
Gene type DF508/p67l
 
S

sunflower

New member
I would stop taking it. Let me tell you my story. I have been taking it four months now after the last two treatments and always two weeks into it I get sick but this tine is nothing like the last it was bad then but worse now. I am so I'll been in bed since Friday coughing, vomiting on and off, loss of appetite, tightness in the chest OMG! Dreadful it was. Then on Thursday midnight coughing up blood bad I couldn't believe it apprix 50mls now that a lot for me. I rang the hospital next day and I know tobi did this to me and I need IV's next week. I won't be taking it again EVEr n pray we get Cayston in Ireland soon. My advice is you know your own body n you know yourself if Tobi has caused you problems. Stop it completely or take two months off it, is your IGe level down? Tobi brought mine down a good bit. Good by Tobi n hurray up Tobi and get here.
Take care
I reply already to someone else who is having problems n CPU my reply I just thought it might help you. Hope things will settle down for you.

Sunflower
40yrs old
ABPA,
Asthma,
Bronchi
Psudemonas and multi resistant bummer.
Fiancé a carrier of CF
Gene type DF508/p67l
 
S

sunflower

New member
I would stop taking it. Let me tell you my story. I have been taking it four months now after the last two treatments and always two weeks into it I get sick but this tine is nothing like the last it was bad then but worse now. I am so I'll been in bed since Friday coughing, vomiting on and off, loss of appetite, tightness in the chest OMG! Dreadful it was. Then on Thursday midnight coughing up blood bad I couldn't believe it apprix 50mls now that a lot for me. I rang the hospital next day and I know tobi did this to me and I need IV's next week. I won't be taking it again EVEr n pray we get Cayston in Ireland soon. My advice is you know your own body n you know yourself if Tobi has caused you problems. Stop it completely or take two months off it, is your IGe level down? Tobi brought mine down a good bit. Good by Tobi n hurray up Tobi and get here.
<br />Take care
<br />I reply already to someone else who is having problems n CPU my reply I just thought it might help you. Hope things will settle down for you.
<br />
<br />Sunflower
<br />40yrs old
<br />ABPA,
<br />Asthma,
<br />Bronchi
<br />Psudemonas and multi resistant bummer.
<br />Fiancé a carrier of CF
<br />Gene type DF508/p67l
 
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