I was sure my PFTs would be higher

[sarabeth87]

I just finished my first month of Cayston Friday and I felt better than I've felt in a long time without IVs. I had an appt today and I was sure that my PFTs would higher than my baseline, but instead they were lower. My baseline FEV1 is about 65% and today it was 58%. I feel good though so I'm confused. The only thing I can think of would be the fact that I was pretty bloated today (i did gain 6 lbs from a month ago, but I think I may be stopped up again.) Could it be that much of a difference just from being bloated? My doctor didn't seem concerned that it was lower, but it really bothers me.

 

[sarabeth87]

I just finished my first month of Cayston Friday and I felt better than I've felt in a long time without IVs. I had an appt today and I was sure that my PFTs would higher than my baseline, but instead they were lower. My baseline FEV1 is about 65% and today it was 58%. I feel good though so I'm confused. The only thing I can think of would be the fact that I was pretty bloated today (i did gain 6 lbs from a month ago, but I think I may be stopped up again.) Could it be that much of a difference just from being bloated? My doctor didn't seem concerned that it was lower, but it really bothers me.

 

[sarabeth87]

I just finished my first month of Cayston Friday and I felt better than I've felt in a long time without IVs. I had an appt today and I was sure that my PFTs would higher than my baseline, but instead they were lower. My baseline FEV1 is about 65% and today it was 58%. I feel good though so I'm confused. The only thing I can think of would be the fact that I was pretty bloated today (i did gain 6 lbs from a month ago, but I think I may be stopped up again.) Could it be that much of a difference just from being bloated? My doctor didn't seem concerned that it was lower, but it really bothers me.

 

[LouLou]

What's your doctors plan? I would guess he'd want to see you back in a few wks to a month to see if it was just some short term effect on your FEV1 and that it did in fact jump back. Also, how long have you been at 65% is that your baseline or just where you were when you started Cayston? I would think you would want to get higher than where you were before starting the abx too so your reaction is not strange at all. Though neither was your doctors since the whole picture, how you feel, etc. is important and cf health should not be judged just on on your pft numbers. Did your FEF 25-75 improve at all or is it worse showing that your very smallest airways are suffering?

Were you treating your MRSA concurrently? I have had problems with Cayston. I have taken 5 or 6 times now with each time resulting in me starting IVs. It definitely makes me trigger shy to start the stuff. We find I need to be an anti-staph abx the whole time we think as this last time I took it for the first two week and by the end of the 28 days I was worse off than I started. And it wasn't just a reactive airways thing...darker mucus, more mucus, lower FEV1 and more tired. For the birds I tell ya! Next time I try it I will do doxy the whole time I think.

 

[LouLou]

What's your doctors plan? I would guess he'd want to see you back in a few wks to a month to see if it was just some short term effect on your FEV1 and that it did in fact jump back. Also, how long have you been at 65% is that your baseline or just where you were when you started Cayston? I would think you would want to get higher than where you were before starting the abx too so your reaction is not strange at all. Though neither was your doctors since the whole picture, how you feel, etc. is important and cf health should not be judged just on on your pft numbers. Did your FEF 25-75 improve at all or is it worse showing that your very smallest airways are suffering?

Were you treating your MRSA concurrently? I have had problems with Cayston. I have taken 5 or 6 times now with each time resulting in me starting IVs. It definitely makes me trigger shy to start the stuff. We find I need to be an anti-staph abx the whole time we think as this last time I took it for the first two week and by the end of the 28 days I was worse off than I started. And it wasn't just a reactive airways thing...darker mucus, more mucus, lower FEV1 and more tired. For the birds I tell ya! Next time I try it I will do doxy the whole time I think.

 

[LouLou]

What's your doctors plan? I would guess he'd want to see you back in a few wks to a month to see if it was just some short term effect on your FEV1 and that it did in fact jump back. Also, how long have you been at 65% is that your baseline or just where you were when you started Cayston? I would think you would want to get higher than where you were before starting the abx too so your reaction is not strange at all. Though neither was your doctors since the whole picture, how you feel, etc. is important and cf health should not be judged just on on your pft numbers. Did your FEF 25-75 improve at all or is it worse showing that your very smallest airways are suffering?
<br />
<br />Were you treating your MRSA concurrently? I have had problems with Cayston. I have taken 5 or 6 times now with each time resulting in me starting IVs. It definitely makes me trigger shy to start the stuff. We find I need to be an anti-staph abx the whole time we think as this last time I took it for the first two week and by the end of the 28 days I was worse off than I started. And it wasn't just a reactive airways thing...darker mucus, more mucus, lower FEV1 and more tired. For the birds I tell ya! Next time I try it I will do doxy the whole time I think.

 

[sarabeth87]

I've been at 65% for a couple years now. My doctor doesn't wanna see me for another 2 months. I really wanted to come back sooner tho so I could do PFTs again. I didn't feel bad while I was on cayston, but I was still coughing up green junk, so she did put me on bactrium for the last two weeks I was on it. Of course now I think I'm starting to get an infection. I woke up this morning feeling like poo and now I'm running a fever but I also got a flu shot yesterday, so maybe that explains today, who know...

 

[sarabeth87]

I've been at 65% for a couple years now. My doctor doesn't wanna see me for another 2 months. I really wanted to come back sooner tho so I could do PFTs again. I didn't feel bad while I was on cayston, but I was still coughing up green junk, so she did put me on bactrium for the last two weeks I was on it. Of course now I think I'm starting to get an infection. I woke up this morning feeling like poo and now I'm running a fever but I also got a flu shot yesterday, so maybe that explains today, who know...

 

[sarabeth87]

I've been at 65% for a couple years now. My doctor doesn't wanna see me for another 2 months. I really wanted to come back sooner tho so I could do PFTs again. I didn't feel bad while I was on cayston, but I was still coughing up green junk, so she did put me on bactrium for the last two weeks I was on it. Of course now I think I'm starting to get an infection. I woke up this morning feeling like poo and now I'm running a fever but I also got a flu shot yesterday, so maybe that explains today, who know...

 

[windex125]

I say don't be so hard on yrself, also numbers are only half of it, if you feel better after the 28days that is what counts. I got my first lesson today with using the Cayston. But I decided I will not start till Nov.1st I hope by next week I still know how to put everything together. I am sorry to hear you are running a fever now, it may be the flu shot that happened with me one time low grade 100.2/3 can't remember exactly. But I always say if you are feeling better that is what counts, listen to yr. body. Pat/55-CF

 

[windex125]

I say don't be so hard on yrself, also numbers are only half of it, if you feel better after the 28days that is what counts. I got my first lesson today with using the Cayston. But I decided I will not start till Nov.1st I hope by next week I still know how to put everything together. I am sorry to hear you are running a fever now, it may be the flu shot that happened with me one time low grade 100.2/3 can't remember exactly. But I always say if you are feeling better that is what counts, listen to yr. body. Pat/55-CF

 

[windex125]

I say don't be so hard on yrself, also numbers are only half of it, if you feel better after the 28days that is what counts. I got my first lesson today with using the Cayston. But I decided I will not start till Nov.1st I hope by next week I still know how to put everything together. I am sorry to hear you are running a fever now, it may be the flu shot that happened with me one time low grade 100.2/3 can't remember exactly. But I always say if you are feeling better that is what counts, listen to yr. body. Pat/55-CF

 

[bethylove]

PFT results vary when your weight changes. ie the more you weigh the more you are expected to blow. The less you weigh the lower your expected number is. Does that make sense? So you might still be around the same absolute volume -- the number in Liters (mines is about 2.25 L and fev1 is about 65% to give you an idea) and the FEV1 'appears' lower, but is around the same. Example, looking at my records a few months ago I was 2.15 L but a higher FEV1 because my weight was lower.

If you're feeling well then keep doing what you're doing! It could be that cayston has moved so much junk around that all initial extra coughing has caused some inflammation and has restricted your airways a bit, resulting in the lower PFTs.

Also, side note, when I've just recently eaten, or feel extremely gassy/bloated my PFTs are slightly lower, due to not being able to expand my diaphragm as much as I usually can (and just plain old feeling gross when I need to force out all the air and squeeze those stomach muscles. ugh. )

 

[bethylove]

PFT results vary when your weight changes. ie the more you weigh the more you are expected to blow. The less you weigh the lower your expected number is. Does that make sense? So you might still be around the same absolute volume -- the number in Liters (mines is about 2.25 L and fev1 is about 65% to give you an idea) and the FEV1 'appears' lower, but is around the same. Example, looking at my records a few months ago I was 2.15 L but a higher FEV1 because my weight was lower.

If you're feeling well then keep doing what you're doing! It could be that cayston has moved so much junk around that all initial extra coughing has caused some inflammation and has restricted your airways a bit, resulting in the lower PFTs.

Also, side note, when I've just recently eaten, or feel extremely gassy/bloated my PFTs are slightly lower, due to not being able to expand my diaphragm as much as I usually can (and just plain old feeling gross when I need to force out all the air and squeeze those stomach muscles. ugh. )

 

[bethylove]

PFT results vary when your weight changes. ie the more you weigh the more you are expected to blow. The less you weigh the lower your expected number is. Does that make sense? So you might still be around the same absolute volume -- the number in Liters (mines is about 2.25 L and fev1 is about 65% to give you an idea) and the FEV1 'appears' lower, but is around the same. Example, looking at my records a few months ago I was 2.15 L but a higher FEV1 because my weight was lower.
<br />
<br />If you're feeling well then keep doing what you're doing! It could be that cayston has moved so much junk around that all initial extra coughing has caused some inflammation and has restricted your airways a bit, resulting in the lower PFTs.
<br />
<br />Also, side note, when I've just recently eaten, or feel extremely gassy/bloated my PFTs are slightly lower, due to not being able to expand my diaphragm as much as I usually can (and just plain old feeling gross when I need to force out all the air and squeeze those stomach muscles. ugh. )