Ever stop taking your meds and feel better?

M

Marcy

New member
Hi Guys.<br>
Before I get into this post I want to make it clear I am not in any
way suggesting anyone stop their meds.<br>
<br>
I am on pulmozyme and a anti inflammatory. My Dr uped my Pulmozyne
to 2 times a day.  I found myself not sleeping at night,
having memory loss and feeling not myself during the day.
In turn sending me for a sleep study and also needing my inhailer
which I never used before.  So the Dr suggested I change it
back to once a day.  So I did, still having slight symptoms. I
never realized it before now, but the pulmozyme made me feel icky.
 I know it makes you cough and all-but should you feel bad on
meds? Soooooo being the person I am I decided to take the weekend
off from both meds. (Which for a CFer I realize I am hardly on any
thing) And you know what I feel like myself again.  I slept
like a baby Fri Sat and Sun night-didn't need my inhaler at
all and I was running with my kids all weekend.  I had a
little shortness of breath and coughed junk as usual but
nothing near where I am on Pulmozyme.  It seems so silly to
me.  It is only a mucus thinner, right? <br>
I dont want to take it now because I feel so good.  Please
give me your input. I also havent needed the antiinflam. med??) I
know a lot of you will suggest go to my Dr.  And I will, but
wanted to hear your thoughts.<br>
I am so confussed.<br>
I look forward to your input.<br>
Marcy<br>
 
M

Marcy

New member
Hi Guys.<br>
Before I get into this post I want to make it clear I am not in any
way suggesting anyone stop their meds.<br>
<br>
I am on pulmozyme and a anti inflammatory. My Dr uped my Pulmozyne
to 2 times a day.  I found myself not sleeping at night,
having memory loss and feeling not myself during the day.
In turn sending me for a sleep study and also needing my inhailer
which I never used before.  So the Dr suggested I change it
back to once a day.  So I did, still having slight symptoms. I
never realized it before now, but the pulmozyme made me feel icky.
 I know it makes you cough and all-but should you feel bad on
meds? Soooooo being the person I am I decided to take the weekend
off from both meds. (Which for a CFer I realize I am hardly on any
thing) And you know what I feel like myself again.  I slept
like a baby Fri Sat and Sun night-didn't need my inhaler at
all and I was running with my kids all weekend.  I had a
little shortness of breath and coughed junk as usual but
nothing near where I am on Pulmozyme.  It seems so silly to
me.  It is only a mucus thinner, right? <br>
I dont want to take it now because I feel so good.  Please
give me your input. I also havent needed the antiinflam. med??) I
know a lot of you will suggest go to my Dr.  And I will, but
wanted to hear your thoughts.<br>
I am so confussed.<br>
I look forward to your input.<br>
Marcy<br>
 
M

Marcy

New member
Hi Guys.<br>
Before I get into this post I want to make it clear I am not in any
way suggesting anyone stop their meds.<br>
<br>
I am on pulmozyme and a anti inflammatory. My Dr uped my Pulmozyne
to 2 times a day.  I found myself not sleeping at night,
having memory loss and feeling not myself during the day.
In turn sending me for a sleep study and also needing my inhailer
which I never used before.  So the Dr suggested I change it
back to once a day.  So I did, still having slight symptoms. I
never realized it before now, but the pulmozyme made me feel icky.
 I know it makes you cough and all-but should you feel bad on
meds? Soooooo being the person I am I decided to take the weekend
off from both meds. (Which for a CFer I realize I am hardly on any
thing) And you know what I feel like myself again.  I slept
like a baby Fri Sat and Sun night-didn't need my inhaler at
all and I was running with my kids all weekend.  I had a
little shortness of breath and coughed junk as usual but
nothing near where I am on Pulmozyme.  It seems so silly to
me.  It is only a mucus thinner, right? <br>
I dont want to take it now because I feel so good.  Please
give me your input. I also havent needed the antiinflam. med??) I
know a lot of you will suggest go to my Dr.  And I will, but
wanted to hear your thoughts.<br>
I am so confussed.<br>
I look forward to your input.<br>
Marcy<br>
 
C

coltsfan715

New member
Hey Marcy,

I had the same problem with Pulmozyme and TOBI towards the end of my IV treatment this past time. The doc put me on Pulmo twice a day also - I had only been on it once a day up until that point. The extended TOBI (by the time I was taken off it I had been on it about 7 weeks) and the upped dose of Pulmo really messed with me. I could barely breathe. I was barely able to stand long enough to take a shower or get dressed without hyperventilating. My legs were weak and shaky, my tongue felt swollen and sore and I felt like I could barely swallow. I talk to the doc and he took me off TOBI for a month and Pulmo for a week. He told me to start the Pulmo again once a day.

I will say I have noticed a difference when I started pulmozyme again this time. Before when I took it - I had been on it for over a decade - I had gotten to the point where I rarely coughed while doing it or afterwards. I had always taken it at night because it actually helped to soothe my cough and helped me to sleep better. Well the week that I stopped it I slept better - then the day I started it again I was up every hr for about 5-10 minutes each time. Then I decided maybe it was making me short of breath in my sleep so I stopped it for a few days (2) and decided I would try again. Well I slept okay (woke up 2 times vs 5) the nights I wasn't on it. Then I tried it again and I woke up every hour again.

My solution I switched from taking it in the evening to taking it in the morning. That has helped greatly. I will say though that I have been coughing more throughout the day while taking it now. It is a productive cough - and I am able to get stuff up with it. I am not overly concerned though as that is what pulmozyme is supposed to do. It is supposed to breakdown the mucus and making it easier for us to move so that we CAN get it out.

As for not taking the meds. I would say to try and keep taking the anti inflammatory because that may be something that you might not feel a difference when you don't take but that it really is helping - by looking at PFTs and such. As for the Pulmozyme. I have had to take on a new attitude with Pulmo. I have had to experiment a little with the time I take it, the order in which I take it with my meds. I had always done albuterol, saline, pulmo. I was having some shortness of breath with finishing the pulmo last, so I switched to albuterol pulmo saline. I have felt better since the switch except for the coughing which has been around since I started the med back. I am to the point now where I take it for a week - then I take a break if I feel I need it - I take a break to get some relief from all the coughing but even at that I still cough I just have to cough harder when I am NOT taking the pulmo to get stuff up - so it is almost more beneficial for me to take the pulmo because yea I may cough more but at least I don't wear myself out coughing hard.

Who knows. I hope you are able to get it all worked out. I would just make sure you tell them your concerns when you talk to the again. Maybe there is something else they can give you that WILL help you feel better if those meds are not doing the trick.

Well take care girl.
Lindsey
 
C

coltsfan715

New member
Hey Marcy,

I had the same problem with Pulmozyme and TOBI towards the end of my IV treatment this past time. The doc put me on Pulmo twice a day also - I had only been on it once a day up until that point. The extended TOBI (by the time I was taken off it I had been on it about 7 weeks) and the upped dose of Pulmo really messed with me. I could barely breathe. I was barely able to stand long enough to take a shower or get dressed without hyperventilating. My legs were weak and shaky, my tongue felt swollen and sore and I felt like I could barely swallow. I talk to the doc and he took me off TOBI for a month and Pulmo for a week. He told me to start the Pulmo again once a day.

I will say I have noticed a difference when I started pulmozyme again this time. Before when I took it - I had been on it for over a decade - I had gotten to the point where I rarely coughed while doing it or afterwards. I had always taken it at night because it actually helped to soothe my cough and helped me to sleep better. Well the week that I stopped it I slept better - then the day I started it again I was up every hr for about 5-10 minutes each time. Then I decided maybe it was making me short of breath in my sleep so I stopped it for a few days (2) and decided I would try again. Well I slept okay (woke up 2 times vs 5) the nights I wasn't on it. Then I tried it again and I woke up every hour again.

My solution I switched from taking it in the evening to taking it in the morning. That has helped greatly. I will say though that I have been coughing more throughout the day while taking it now. It is a productive cough - and I am able to get stuff up with it. I am not overly concerned though as that is what pulmozyme is supposed to do. It is supposed to breakdown the mucus and making it easier for us to move so that we CAN get it out.

As for not taking the meds. I would say to try and keep taking the anti inflammatory because that may be something that you might not feel a difference when you don't take but that it really is helping - by looking at PFTs and such. As for the Pulmozyme. I have had to take on a new attitude with Pulmo. I have had to experiment a little with the time I take it, the order in which I take it with my meds. I had always done albuterol, saline, pulmo. I was having some shortness of breath with finishing the pulmo last, so I switched to albuterol pulmo saline. I have felt better since the switch except for the coughing which has been around since I started the med back. I am to the point now where I take it for a week - then I take a break if I feel I need it - I take a break to get some relief from all the coughing but even at that I still cough I just have to cough harder when I am NOT taking the pulmo to get stuff up - so it is almost more beneficial for me to take the pulmo because yea I may cough more but at least I don't wear myself out coughing hard.

Who knows. I hope you are able to get it all worked out. I would just make sure you tell them your concerns when you talk to the again. Maybe there is something else they can give you that WILL help you feel better if those meds are not doing the trick.

Well take care girl.
Lindsey
 
C

coltsfan715

New member
Hey Marcy,

I had the same problem with Pulmozyme and TOBI towards the end of my IV treatment this past time. The doc put me on Pulmo twice a day also - I had only been on it once a day up until that point. The extended TOBI (by the time I was taken off it I had been on it about 7 weeks) and the upped dose of Pulmo really messed with me. I could barely breathe. I was barely able to stand long enough to take a shower or get dressed without hyperventilating. My legs were weak and shaky, my tongue felt swollen and sore and I felt like I could barely swallow. I talk to the doc and he took me off TOBI for a month and Pulmo for a week. He told me to start the Pulmo again once a day.

I will say I have noticed a difference when I started pulmozyme again this time. Before when I took it - I had been on it for over a decade - I had gotten to the point where I rarely coughed while doing it or afterwards. I had always taken it at night because it actually helped to soothe my cough and helped me to sleep better. Well the week that I stopped it I slept better - then the day I started it again I was up every hr for about 5-10 minutes each time. Then I decided maybe it was making me short of breath in my sleep so I stopped it for a few days (2) and decided I would try again. Well I slept okay (woke up 2 times vs 5) the nights I wasn't on it. Then I tried it again and I woke up every hour again.

My solution I switched from taking it in the evening to taking it in the morning. That has helped greatly. I will say though that I have been coughing more throughout the day while taking it now. It is a productive cough - and I am able to get stuff up with it. I am not overly concerned though as that is what pulmozyme is supposed to do. It is supposed to breakdown the mucus and making it easier for us to move so that we CAN get it out.

As for not taking the meds. I would say to try and keep taking the anti inflammatory because that may be something that you might not feel a difference when you don't take but that it really is helping - by looking at PFTs and such. As for the Pulmozyme. I have had to take on a new attitude with Pulmo. I have had to experiment a little with the time I take it, the order in which I take it with my meds. I had always done albuterol, saline, pulmo. I was having some shortness of breath with finishing the pulmo last, so I switched to albuterol pulmo saline. I have felt better since the switch except for the coughing which has been around since I started the med back. I am to the point now where I take it for a week - then I take a break if I feel I need it - I take a break to get some relief from all the coughing but even at that I still cough I just have to cough harder when I am NOT taking the pulmo to get stuff up - so it is almost more beneficial for me to take the pulmo because yea I may cough more but at least I don't wear myself out coughing hard.

Who knows. I hope you are able to get it all worked out. I would just make sure you tell them your concerns when you talk to the again. Maybe there is something else they can give you that WILL help you feel better if those meds are not doing the trick.

Well take care girl.
Lindsey
 
G

gsplover

New member
I have missed doses of my meds and have felt better. I use to skip my pulmozyme all the time whenI was in my twenties because I never saw that it made a diffence. Now if I miss it, I can tell a difference.

I have had sleep problems lately and I believe it is medication induced. My doctor actually asked me when I was taking my pulmozyme and my advair and my inhalors. If taking them too close to your bedtime they can effect your sleep.

I was taking advair twice a day, now I only take in in the morning. I do see that changing it to only once a day has hurt my health any but I am starting to sleep better. I do my puimozyme first thing in the morning. I stopped taking claritin D and a taking any albuterol before bed. Guess what...better sleep with no worsening health problems. I think sometimes doctors will give us some preventative medications that we may be able to go with out.

I don't change my medications unless talking with my doctor but he is very open minded and knows that I know my body better than any one else.

I would definately talk with your doctor.
 
G

gsplover

New member
I have missed doses of my meds and have felt better. I use to skip my pulmozyme all the time whenI was in my twenties because I never saw that it made a diffence. Now if I miss it, I can tell a difference.

I have had sleep problems lately and I believe it is medication induced. My doctor actually asked me when I was taking my pulmozyme and my advair and my inhalors. If taking them too close to your bedtime they can effect your sleep.

I was taking advair twice a day, now I only take in in the morning. I do see that changing it to only once a day has hurt my health any but I am starting to sleep better. I do my puimozyme first thing in the morning. I stopped taking claritin D and a taking any albuterol before bed. Guess what...better sleep with no worsening health problems. I think sometimes doctors will give us some preventative medications that we may be able to go with out.

I don't change my medications unless talking with my doctor but he is very open minded and knows that I know my body better than any one else.

I would definately talk with your doctor.
 
G

gsplover

New member
I have missed doses of my meds and have felt better. I use to skip my pulmozyme all the time whenI was in my twenties because I never saw that it made a diffence. Now if I miss it, I can tell a difference.

I have had sleep problems lately and I believe it is medication induced. My doctor actually asked me when I was taking my pulmozyme and my advair and my inhalors. If taking them too close to your bedtime they can effect your sleep.

I was taking advair twice a day, now I only take in in the morning. I do see that changing it to only once a day has hurt my health any but I am starting to sleep better. I do my puimozyme first thing in the morning. I stopped taking claritin D and a taking any albuterol before bed. Guess what...better sleep with no worsening health problems. I think sometimes doctors will give us some preventative medications that we may be able to go with out.

I don't change my medications unless talking with my doctor but he is very open minded and knows that I know my body better than any one else.

I would definately talk with your doctor.
 
N

NoExcuses

New member
I've stopped meds before and I feel like crap when I do. My FEV1's are 95% too, so you'd think I wouldn't feel the meds being stopped.

Having said that, I have heard ofpeople like Lindsey who don't do well on Pulmozyme. If you read my Dr. Warwick blog, he seems to have found people who don't do well on Pulmozyme as well.

Here's what I would do - contact your area's Pulmozyme rep. Your doctor will know who it is. The rep works for Genentech and calls on many different CF centers and has input from many physicians about their clinical experience. The rep should be able to tell u perhaps he/she knows if there is a certain # of hours u shouldn't take the med before bedtime, or if it's interacting with anything else going on with your body.

Good luck.
 
N

NoExcuses

New member
I've stopped meds before and I feel like crap when I do. My FEV1's are 95% too, so you'd think I wouldn't feel the meds being stopped.

Having said that, I have heard ofpeople like Lindsey who don't do well on Pulmozyme. If you read my Dr. Warwick blog, he seems to have found people who don't do well on Pulmozyme as well.

Here's what I would do - contact your area's Pulmozyme rep. Your doctor will know who it is. The rep works for Genentech and calls on many different CF centers and has input from many physicians about their clinical experience. The rep should be able to tell u perhaps he/she knows if there is a certain # of hours u shouldn't take the med before bedtime, or if it's interacting with anything else going on with your body.

Good luck.
 
N

NoExcuses

New member
I've stopped meds before and I feel like crap when I do. My FEV1's are 95% too, so you'd think I wouldn't feel the meds being stopped.

Having said that, I have heard ofpeople like Lindsey who don't do well on Pulmozyme. If you read my Dr. Warwick blog, he seems to have found people who don't do well on Pulmozyme as well.

Here's what I would do - contact your area's Pulmozyme rep. Your doctor will know who it is. The rep works for Genentech and calls on many different CF centers and has input from many physicians about their clinical experience. The rep should be able to tell u perhaps he/she knows if there is a certain # of hours u shouldn't take the med before bedtime, or if it's interacting with anything else going on with your body.

Good luck.
 
G

gsplover

New member
I take both advair and flonase once a day and see improvement than when I don't take them. My doctor was the one to tell me to do it so I do it. He figures probabley figures I'll get some benefit from it if I take it just once a day and get some sleep at night.
 
G

gsplover

New member
I take both advair and flonase once a day and see improvement than when I don't take them. My doctor was the one to tell me to do it so I do it. He figures probabley figures I'll get some benefit from it if I take it just once a day and get some sleep at night.
 
G

gsplover

New member
I take both advair and flonase once a day and see improvement than when I don't take them. My doctor was the one to tell me to do it so I do it. He figures probabley figures I'll get some benefit from it if I take it just once a day and get some sleep at night.
 
M

mneville

Guest
Amy- Just curious, do you still take Pulmozyne after meeting with Warwick? Our two year old does but I would really like to take him off and see if there is any difference? Warwick said chances are that he doesn't need it?
Megan
 
M

mneville

Guest
Amy- Just curious, do you still take Pulmozyne after meeting with Warwick? Our two year old does but I would really like to take him off and see if there is any difference? Warwick said chances are that he doesn't need it?
Megan
 
You must log in or register to reply here.
Top