Long Term Effects of the drugs we take

[Giggles]

Just wanted to see if anyone felt this way at all about all the drugs we take. Now some of the drugs I take I CAN NOT live without. Drugs like Tobi, Pulmozyme, Albuterol and my enzymes. But the doctor has me on other drugs cause it is "good" for me ie. Acid reducer to make the enzymes work better. I also take Pulmicort which is a Corticosteroid and that really worries me on long term effects.

I guess I am just concerned that some of the drugs I take will have long term problems whether it be my kidneys, liver, stomach.


Anyone else worried or concerned and what are you doing about it?

Please share.

Jennifer 35 years old with CF and CFRD

 

[Giggles]

Just wanted to see if anyone felt this way at all about all the drugs we take. Now some of the drugs I take I CAN NOT live without. Drugs like Tobi, Pulmozyme, Albuterol and my enzymes. But the doctor has me on other drugs cause it is "good" for me ie. Acid reducer to make the enzymes work better. I also take Pulmicort which is a Corticosteroid and that really worries me on long term effects.

I guess I am just concerned that some of the drugs I take will have long term problems whether it be my kidneys, liver, stomach.


Anyone else worried or concerned and what are you doing about it?

Please share.

Jennifer 35 years old with CF and CFRD

 

[Giggles]

Just wanted to see if anyone felt this way at all about all the drugs we take. Now some of the drugs I take I CAN NOT live without. Drugs like Tobi, Pulmozyme, Albuterol and my enzymes. But the doctor has me on other drugs cause it is "good" for me ie. Acid reducer to make the enzymes work better. I also take Pulmicort which is a Corticosteroid and that really worries me on long term effects.

I guess I am just concerned that some of the drugs I take will have long term problems whether it be my kidneys, liver, stomach.


Anyone else worried or concerned and what are you doing about it?

Please share.

Jennifer 35 years old with CF and CFRD

 

[Giggles]

Just wanted to see if anyone felt this way at all about all the drugs we take. Now some of the drugs I take I CAN NOT live without. Drugs like Tobi, Pulmozyme, Albuterol and my enzymes. But the doctor has me on other drugs cause it is "good" for me ie. Acid reducer to make the enzymes work better. I also take Pulmicort which is a Corticosteroid and that really worries me on long term effects.

I guess I am just concerned that some of the drugs I take will have long term problems whether it be my kidneys, liver, stomach.


Anyone else worried or concerned and what are you doing about it?

Please share.

Jennifer 35 years old with CF and CFRD

 

[Giggles]

Just wanted to see if anyone felt this way at all about all the drugs we take. Now some of the drugs I take I CAN NOT live without. Drugs like Tobi, Pulmozyme, Albuterol and my enzymes. But the doctor has me on other drugs cause it is "good" for me ie. Acid reducer to make the enzymes work better. I also take Pulmicort which is a Corticosteroid and that really worries me on long term effects.

I guess I am just concerned that some of the drugs I take will have long term problems whether it be my kidneys, liver, stomach.


Anyone else worried or concerned and what are you doing about it?

Please share.

Jennifer 35 years old with CF and CFRD

 

[Giggles]

Just wanted to see if anyone felt this way at all about all the drugs we take. Now some of the drugs I take I CAN NOT live without. Drugs like Tobi, Pulmozyme, Albuterol and my enzymes. But the doctor has me on other drugs cause it is "good" for me ie. Acid reducer to make the enzymes work better. I also take Pulmicort which is a Corticosteroid and that really worries me on long term effects.

I guess I am just concerned that some of the drugs I take will have long term problems whether it be my kidneys, liver, stomach.


Anyone else worried or concerned and what are you doing about it?

Please share.

Jennifer 35 years old with CF and CFRD

 

[NoExcuses]

I'm more concerned about getting on the freeway in the morning to go to work. Afterall, I have a probability of dying that way.

The reality is that we only now have the luxury as CFers to think about long term affects of medications. But really, the majority of us are alive due to these meds.

Perhaps the PPI that you are on to make your enzymes work better is giving you better nutrition - which prevents lung infections. That makes you live longer!

And pulmicort may be reducing inflammation that helps to not exacerbate further lung issues. That makes you live longer as well.

So you can stop those meds, perhaps get more lung issues and die sooner. Or you can continue to take them and actually live to a ripe old age where maybe, just maybe, there may be affects from these meds.

The choice of not worrying, buth rather being thrilled that I have access to these meds, is obvious to me <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

I'm more concerned about getting on the freeway in the morning to go to work. Afterall, I have a probability of dying that way.

The reality is that we only now have the luxury as CFers to think about long term affects of medications. But really, the majority of us are alive due to these meds.

Perhaps the PPI that you are on to make your enzymes work better is giving you better nutrition - which prevents lung infections. That makes you live longer!

And pulmicort may be reducing inflammation that helps to not exacerbate further lung issues. That makes you live longer as well.

So you can stop those meds, perhaps get more lung issues and die sooner. Or you can continue to take them and actually live to a ripe old age where maybe, just maybe, there may be affects from these meds.

The choice of not worrying, buth rather being thrilled that I have access to these meds, is obvious to me <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

I'm more concerned about getting on the freeway in the morning to go to work. Afterall, I have a probability of dying that way.

The reality is that we only now have the luxury as CFers to think about long term affects of medications. But really, the majority of us are alive due to these meds.

Perhaps the PPI that you are on to make your enzymes work better is giving you better nutrition - which prevents lung infections. That makes you live longer!

And pulmicort may be reducing inflammation that helps to not exacerbate further lung issues. That makes you live longer as well.

So you can stop those meds, perhaps get more lung issues and die sooner. Or you can continue to take them and actually live to a ripe old age where maybe, just maybe, there may be affects from these meds.

The choice of not worrying, buth rather being thrilled that I have access to these meds, is obvious to me <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

I'm more concerned about getting on the freeway in the morning to go to work. Afterall, I have a probability of dying that way.

The reality is that we only now have the luxury as CFers to think about long term affects of medications. But really, the majority of us are alive due to these meds.

Perhaps the PPI that you are on to make your enzymes work better is giving you better nutrition - which prevents lung infections. That makes you live longer!

And pulmicort may be reducing inflammation that helps to not exacerbate further lung issues. That makes you live longer as well.

So you can stop those meds, perhaps get more lung issues and die sooner. Or you can continue to take them and actually live to a ripe old age where maybe, just maybe, there may be affects from these meds.

The choice of not worrying, buth rather being thrilled that I have access to these meds, is obvious to me <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

I'm more concerned about getting on the freeway in the morning to go to work. Afterall, I have a probability of dying that way.

The reality is that we only now have the luxury as CFers to think about long term affects of medications. But really, the majority of us are alive due to these meds.

Perhaps the PPI that you are on to make your enzymes work better is giving you better nutrition - which prevents lung infections. That makes you live longer!

And pulmicort may be reducing inflammation that helps to not exacerbate further lung issues. That makes you live longer as well.

So you can stop those meds, perhaps get more lung issues and die sooner. Or you can continue to take them and actually live to a ripe old age where maybe, just maybe, there may be affects from these meds.

The choice of not worrying, buth rather being thrilled that I have access to these meds, is obvious to me <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

I'm more concerned about getting on the freeway in the morning to go to work. Afterall, I have a probability of dying that way.

The reality is that we only now have the luxury as CFers to think about long term affects of medications. But really, the majority of us are alive due to these meds.

Perhaps the PPI that you are on to make your enzymes work better is giving you better nutrition - which prevents lung infections. That makes you live longer!

And pulmicort may be reducing inflammation that helps to not exacerbate further lung issues. That makes you live longer as well.

So you can stop those meds, perhaps get more lung issues and die sooner. Or you can continue to take them and actually live to a ripe old age where maybe, just maybe, there may be affects from these meds.

The choice of not worrying, buth rather being thrilled that I have access to these meds, is obvious to me <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[LouLou]

I don't worry to much about the long term effects of my med's although I do question each time a new one is added and do proper research. I think we should all challenge our doctors a bit...not just follow along blindly. The PPI is an interesting one. I have never had reflux in terms of tasting acid, burping etc. My doctor back in the early '00's put me on a PPI and said that it would make my enzymes work better. I am a healthy weight and felt my enzymes did a good job. I actually felt like I burped more while on the drug. I gave it a go for 6 months and we jointly decided to discontinue its use.

Now I am considering that maybe I have acid reflux problems because of a swallowing problem that seems to be getting worse. Instead of just going on a PPI I will get the necessary test - not sure if it's an endoscopy or a barium swallow but either way I will visit specialist to see what's up.

I will say I have a worry of cancer. I wish we could get scanned yearly to detect it early. Ever since hearing from Karen how Troy wasn't eligible for a lung transplant because one has to be cancer free for 5 years it has concerned me. I don't want cancer because I always want to be transplant eligible.

 

[LouLou]

I don't worry to much about the long term effects of my med's although I do question each time a new one is added and do proper research. I think we should all challenge our doctors a bit...not just follow along blindly. The PPI is an interesting one. I have never had reflux in terms of tasting acid, burping etc. My doctor back in the early '00's put me on a PPI and said that it would make my enzymes work better. I am a healthy weight and felt my enzymes did a good job. I actually felt like I burped more while on the drug. I gave it a go for 6 months and we jointly decided to discontinue its use.

Now I am considering that maybe I have acid reflux problems because of a swallowing problem that seems to be getting worse. Instead of just going on a PPI I will get the necessary test - not sure if it's an endoscopy or a barium swallow but either way I will visit specialist to see what's up.

I will say I have a worry of cancer. I wish we could get scanned yearly to detect it early. Ever since hearing from Karen how Troy wasn't eligible for a lung transplant because one has to be cancer free for 5 years it has concerned me. I don't want cancer because I always want to be transplant eligible.

 

[LouLou]

I don't worry to much about the long term effects of my med's although I do question each time a new one is added and do proper research. I think we should all challenge our doctors a bit...not just follow along blindly. The PPI is an interesting one. I have never had reflux in terms of tasting acid, burping etc. My doctor back in the early '00's put me on a PPI and said that it would make my enzymes work better. I am a healthy weight and felt my enzymes did a good job. I actually felt like I burped more while on the drug. I gave it a go for 6 months and we jointly decided to discontinue its use.

Now I am considering that maybe I have acid reflux problems because of a swallowing problem that seems to be getting worse. Instead of just going on a PPI I will get the necessary test - not sure if it's an endoscopy or a barium swallow but either way I will visit specialist to see what's up.

I will say I have a worry of cancer. I wish we could get scanned yearly to detect it early. Ever since hearing from Karen how Troy wasn't eligible for a lung transplant because one has to be cancer free for 5 years it has concerned me. I don't want cancer because I always want to be transplant eligible.

 

[LouLou]

I don't worry to much about the long term effects of my med's although I do question each time a new one is added and do proper research. I think we should all challenge our doctors a bit...not just follow along blindly. The PPI is an interesting one. I have never had reflux in terms of tasting acid, burping etc. My doctor back in the early '00's put me on a PPI and said that it would make my enzymes work better. I am a healthy weight and felt my enzymes did a good job. I actually felt like I burped more while on the drug. I gave it a go for 6 months and we jointly decided to discontinue its use.

Now I am considering that maybe I have acid reflux problems because of a swallowing problem that seems to be getting worse. Instead of just going on a PPI I will get the necessary test - not sure if it's an endoscopy or a barium swallow but either way I will visit specialist to see what's up.

I will say I have a worry of cancer. I wish we could get scanned yearly to detect it early. Ever since hearing from Karen how Troy wasn't eligible for a lung transplant because one has to be cancer free for 5 years it has concerned me. I don't want cancer because I always want to be transplant eligible.

 

[LouLou]

I don't worry to much about the long term effects of my med's although I do question each time a new one is added and do proper research. I think we should all challenge our doctors a bit...not just follow along blindly. The PPI is an interesting one. I have never had reflux in terms of tasting acid, burping etc. My doctor back in the early '00's put me on a PPI and said that it would make my enzymes work better. I am a healthy weight and felt my enzymes did a good job. I actually felt like I burped more while on the drug. I gave it a go for 6 months and we jointly decided to discontinue its use.

Now I am considering that maybe I have acid reflux problems because of a swallowing problem that seems to be getting worse. Instead of just going on a PPI I will get the necessary test - not sure if it's an endoscopy or a barium swallow but either way I will visit specialist to see what's up.

I will say I have a worry of cancer. I wish we could get scanned yearly to detect it early. Ever since hearing from Karen how Troy wasn't eligible for a lung transplant because one has to be cancer free for 5 years it has concerned me. I don't want cancer because I always want to be transplant eligible.

 

[LouLou]

I don't worry to much about the long term effects of my med's although I do question each time a new one is added and do proper research. I think we should all challenge our doctors a bit...not just follow along blindly. The PPI is an interesting one. I have never had reflux in terms of tasting acid, burping etc. My doctor back in the early '00's put me on a PPI and said that it would make my enzymes work better. I am a healthy weight and felt my enzymes did a good job. I actually felt like I burped more while on the drug. I gave it a go for 6 months and we jointly decided to discontinue its use.

Now I am considering that maybe I have acid reflux problems because of a swallowing problem that seems to be getting worse. Instead of just going on a PPI I will get the necessary test - not sure if it's an endoscopy or a barium swallow but either way I will visit specialist to see what's up.

I will say I have a worry of cancer. I wish we could get scanned yearly to detect it early. Ever since hearing from Karen how Troy wasn't eligible for a lung transplant because one has to be cancer free for 5 years it has concerned me. I don't want cancer because I always want to be transplant eligible.

 

[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.