Long Term Effects of the drugs we take

[ktsmom]

I worry about this off and on for my daughter, to the point of obsession for about a week, and then I get over it. Regarding her Prevacid and Zithromax, we have started her on Culturelle to try to maintain the "good" gut flora. I will say that when she was first dx we would miss her Prevacid once and a while and we could defintely tell a difference in her BM's. So we don't miss taking it anymore.

I also really struggled with it when they put her on Hypertonic Saline, and had to also add Albuterol to counteract the possible HTS side effects.

She is already on Ursodiol for her liver. I'm having a hearing test done for her this week to establish a baseline (I swear she loses some hearing when she is on her TOBI cycle).

So am I concered, yes. What do I do - In the end I think you have to do research to bolster your own opinion, work closely with your doctor, and have a little faith for good measure.

 

[ktsmom]

I worry about this off and on for my daughter, to the point of obsession for about a week, and then I get over it. Regarding her Prevacid and Zithromax, we have started her on Culturelle to try to maintain the "good" gut flora. I will say that when she was first dx we would miss her Prevacid once and a while and we could defintely tell a difference in her BM's. So we don't miss taking it anymore.

I also really struggled with it when they put her on Hypertonic Saline, and had to also add Albuterol to counteract the possible HTS side effects.

She is already on Ursodiol for her liver. I'm having a hearing test done for her this week to establish a baseline (I swear she loses some hearing when she is on her TOBI cycle).

So am I concered, yes. What do I do - In the end I think you have to do research to bolster your own opinion, work closely with your doctor, and have a little faith for good measure.

 

[ktsmom]

I worry about this off and on for my daughter, to the point of obsession for about a week, and then I get over it. Regarding her Prevacid and Zithromax, we have started her on Culturelle to try to maintain the "good" gut flora. I will say that when she was first dx we would miss her Prevacid once and a while and we could defintely tell a difference in her BM's. So we don't miss taking it anymore.

I also really struggled with it when they put her on Hypertonic Saline, and had to also add Albuterol to counteract the possible HTS side effects.

She is already on Ursodiol for her liver. I'm having a hearing test done for her this week to establish a baseline (I swear she loses some hearing when she is on her TOBI cycle).

So am I concered, yes. What do I do - In the end I think you have to do research to bolster your own opinion, work closely with your doctor, and have a little faith for good measure.

 

[ktsmom]

I worry about this off and on for my daughter, to the point of obsession for about a week, and then I get over it. Regarding her Prevacid and Zithromax, we have started her on Culturelle to try to maintain the "good" gut flora. I will say that when she was first dx we would miss her Prevacid once and a while and we could defintely tell a difference in her BM's. So we don't miss taking it anymore.

I also really struggled with it when they put her on Hypertonic Saline, and had to also add Albuterol to counteract the possible HTS side effects.

She is already on Ursodiol for her liver. I'm having a hearing test done for her this week to establish a baseline (I swear she loses some hearing when she is on her TOBI cycle).

So am I concered, yes. What do I do - In the end I think you have to do research to bolster your own opinion, work closely with your doctor, and have a little faith for good measure.

 

[Landy]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Giggles</b></i>

I also take Pulmicort which is a Corticosteroid and that really worries me on long term effects.


Jennifer 35 years old with CF and CFRD</end quote></div>

What could be the long term effects of Pulmicort, or albuterol too, for that matter?

 

[Landy]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Giggles</b></i>

I also take Pulmicort which is a Corticosteroid and that really worries me on long term effects.


Jennifer 35 years old with CF and CFRD</end quote></div>

What could be the long term effects of Pulmicort, or albuterol too, for that matter?

 

[Landy]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Giggles</b></i>

I also take Pulmicort which is a Corticosteroid and that really worries me on long term effects.


Jennifer 35 years old with CF and CFRD</end quote></div>

What could be the long term effects of Pulmicort, or albuterol too, for that matter?

 

[Landy]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Giggles</b></i>

I also take Pulmicort which is a Corticosteroid and that really worries me on long term effects.


Jennifer 35 years old with CF and CFRD</end quote></div>

What could be the long term effects of Pulmicort, or albuterol too, for that matter?

 

[Landy]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Giggles</b></i>

I also take Pulmicort which is a Corticosteroid and that really worries me on long term effects.


Jennifer 35 years old with CF and CFRD</end quote>

What could be the long term effects of Pulmicort, or albuterol too, for that matter?

 

[Landy]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Giggles</b></i>

I also take Pulmicort which is a Corticosteroid and that really worries me on long term effects.


Jennifer 35 years old with CF and CFRD</end quote>

What could be the long term effects of Pulmicort, or albuterol too, for that matter?

 

[Giggles]

Thanks for the responses. I for sure agree that we are here and doing well because of the drugs and they do prolong our life. I just sometimes worry that I will prolong my life CF wise and then get all these complications because of the drugs.

But I do agree that it is better to take them and I am a firm believer in modern medicine.

The worry just popps in my head sometimes.

Thanks for all the bluntness and I appreciate all the comments


Stay well!!!!!

Jennifer 35 years old with CF and CFRD

 

[Giggles]

Thanks for the responses. I for sure agree that we are here and doing well because of the drugs and they do prolong our life. I just sometimes worry that I will prolong my life CF wise and then get all these complications because of the drugs.

But I do agree that it is better to take them and I am a firm believer in modern medicine.

The worry just popps in my head sometimes.

Thanks for all the bluntness and I appreciate all the comments


Stay well!!!!!

Jennifer 35 years old with CF and CFRD

 

[Giggles]

Thanks for the responses. I for sure agree that we are here and doing well because of the drugs and they do prolong our life. I just sometimes worry that I will prolong my life CF wise and then get all these complications because of the drugs.

But I do agree that it is better to take them and I am a firm believer in modern medicine.

The worry just popps in my head sometimes.

Thanks for all the bluntness and I appreciate all the comments


Stay well!!!!!

Jennifer 35 years old with CF and CFRD

 

[Giggles]

Thanks for the responses. I for sure agree that we are here and doing well because of the drugs and they do prolong our life. I just sometimes worry that I will prolong my life CF wise and then get all these complications because of the drugs.

But I do agree that it is better to take them and I am a firm believer in modern medicine.

The worry just popps in my head sometimes.

Thanks for all the bluntness and I appreciate all the comments


Stay well!!!!!

Jennifer 35 years old with CF and CFRD

 

[Giggles]

Thanks for the responses. I for sure agree that we are here and doing well because of the drugs and they do prolong our life. I just sometimes worry that I will prolong my life CF wise and then get all these complications because of the drugs.

But I do agree that it is better to take them and I am a firm believer in modern medicine.

The worry just popps in my head sometimes.

Thanks for all the bluntness and I appreciate all the comments


Stay well!!!!!

Jennifer 35 years old with CF and CFRD

 

[Giggles]

Thanks for the responses. I for sure agree that we are here and doing well because of the drugs and they do prolong our life. I just sometimes worry that I will prolong my life CF wise and then get all these complications because of the drugs.

But I do agree that it is better to take them and I am a firm believer in modern medicine.

The worry just popps in my head sometimes.

Thanks for all the bluntness and I appreciate all the comments


Stay well!!!!!

Jennifer 35 years old with CF and CFRD

 

[JazzysMom]

I honestly dont think or worry about long term affects since the short term affects is my immediate concerns. I suppose if we had enough CFers living long enough to have studies on things at this time that I might take a different point of view, but for now....NOPE! I am sure the younger generations dx will have these issues arise. Like so many other things....it can be years before certain issues arise because the studies/research dont that long of a period.


EDITED TO ADD that the one med that comes to mind immediate although I am not currently on them is Prednisone. The high sugars & bone loss that comes with that is one of the few things I know that affect CFers "immediately". BUT if I had to choose between breathing thanks to the beds & worry about the other affects I would still choose breathing.

 

[JazzysMom]

I honestly dont think or worry about long term affects since the short term affects is my immediate concerns. I suppose if we had enough CFers living long enough to have studies on things at this time that I might take a different point of view, but for now....NOPE! I am sure the younger generations dx will have these issues arise. Like so many other things....it can be years before certain issues arise because the studies/research dont that long of a period.


EDITED TO ADD that the one med that comes to mind immediate although I am not currently on them is Prednisone. The high sugars & bone loss that comes with that is one of the few things I know that affect CFers "immediately". BUT if I had to choose between breathing thanks to the beds & worry about the other affects I would still choose breathing.

 

[JazzysMom]

I honestly dont think or worry about long term affects since the short term affects is my immediate concerns. I suppose if we had enough CFers living long enough to have studies on things at this time that I might take a different point of view, but for now....NOPE! I am sure the younger generations dx will have these issues arise. Like so many other things....it can be years before certain issues arise because the studies/research dont that long of a period.


EDITED TO ADD that the one med that comes to mind immediate although I am not currently on them is Prednisone. The high sugars & bone loss that comes with that is one of the few things I know that affect CFers "immediately". BUT if I had to choose between breathing thanks to the beds & worry about the other affects I would still choose breathing.

 

[JazzysMom]

I honestly dont think or worry about long term affects since the short term affects is my immediate concerns. I suppose if we had enough CFers living long enough to have studies on things at this time that I might take a different point of view, but for now....NOPE! I am sure the younger generations dx will have these issues arise. Like so many other things....it can be years before certain issues arise because the studies/research dont that long of a period.


EDITED TO ADD that the one med that comes to mind immediate although I am not currently on them is Prednisone. The high sugars & bone loss that comes with that is one of the few things I know that affect CFers "immediately". BUT if I had to choose between breathing thanks to the beds & worry about the other affects I would still choose breathing.