Long Term Effects of the drugs we take

[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.

 

[Lilith]

Yeah, I've thought about it. I even worried about it for a while. But I came to this conclusion; we're going to die from something. Whether it be the CF, or the side effects of the medication. Personally, in the long run, I think we've got a better chance with the meds than without.

I think your issue, though, Jennifer, is that you think your being overmedicated? If that's the case, I would go down your list of meds with your doctor and get him to explain to you exactly why you're taking each one. Ask him/her if you can perhaps cut anything from the list safely, and if there is a long-term risk with the meds. I would fancy a guess that most of the meds that may have side-effects are the ones you can't do without, but that's just a guess.

FYI, just to add; I.V. antibiotics are more likely to have damaging side-effects than everyday meds, but that's if they are used too often or for too long.

 

[Lilith]

Yeah, I've thought about it. I even worried about it for a while. But I came to this conclusion; we're going to die from something. Whether it be the CF, or the side effects of the medication. Personally, in the long run, I think we've got a better chance with the meds than without.

I think your issue, though, Jennifer, is that you think your being overmedicated? If that's the case, I would go down your list of meds with your doctor and get him to explain to you exactly why you're taking each one. Ask him/her if you can perhaps cut anything from the list safely, and if there is a long-term risk with the meds. I would fancy a guess that most of the meds that may have side-effects are the ones you can't do without, but that's just a guess.

FYI, just to add; I.V. antibiotics are more likely to have damaging side-effects than everyday meds, but that's if they are used too often or for too long.

 

[Lilith]

Yeah, I've thought about it. I even worried about it for a while. But I came to this conclusion; we're going to die from something. Whether it be the CF, or the side effects of the medication. Personally, in the long run, I think we've got a better chance with the meds than without.

I think your issue, though, Jennifer, is that you think your being overmedicated? If that's the case, I would go down your list of meds with your doctor and get him to explain to you exactly why you're taking each one. Ask him/her if you can perhaps cut anything from the list safely, and if there is a long-term risk with the meds. I would fancy a guess that most of the meds that may have side-effects are the ones you can't do without, but that's just a guess.

FYI, just to add; I.V. antibiotics are more likely to have damaging side-effects than everyday meds, but that's if they are used too often or for too long.

 

[Lilith]

Yeah, I've thought about it. I even worried about it for a while. But I came to this conclusion; we're going to die from something. Whether it be the CF, or the side effects of the medication. Personally, in the long run, I think we've got a better chance with the meds than without.

I think your issue, though, Jennifer, is that you think your being overmedicated? If that's the case, I would go down your list of meds with your doctor and get him to explain to you exactly why you're taking each one. Ask him/her if you can perhaps cut anything from the list safely, and if there is a long-term risk with the meds. I would fancy a guess that most of the meds that may have side-effects are the ones you can't do without, but that's just a guess.

FYI, just to add; I.V. antibiotics are more likely to have damaging side-effects than everyday meds, but that's if they are used too often or for too long.

 

[Lilith]

Yeah, I've thought about it. I even worried about it for a while. But I came to this conclusion; we're going to die from something. Whether it be the CF, or the side effects of the medication. Personally, in the long run, I think we've got a better chance with the meds than without.

I think your issue, though, Jennifer, is that you think your being overmedicated? If that's the case, I would go down your list of meds with your doctor and get him to explain to you exactly why you're taking each one. Ask him/her if you can perhaps cut anything from the list safely, and if there is a long-term risk with the meds. I would fancy a guess that most of the meds that may have side-effects are the ones you can't do without, but that's just a guess.

FYI, just to add; I.V. antibiotics are more likely to have damaging side-effects than everyday meds, but that's if they are used too often or for too long.

 

[Lilith]

Yeah, I've thought about it. I even worried about it for a while. But I came to this conclusion; we're going to die from something. Whether it be the CF, or the side effects of the medication. Personally, in the long run, I think we've got a better chance with the meds than without.

I think your issue, though, Jennifer, is that you think your being overmedicated? If that's the case, I would go down your list of meds with your doctor and get him to explain to you exactly why you're taking each one. Ask him/her if you can perhaps cut anything from the list safely, and if there is a long-term risk with the meds. I would fancy a guess that most of the meds that may have side-effects are the ones you can't do without, but that's just a guess.

FYI, just to add; I.V. antibiotics are more likely to have damaging side-effects than everyday meds, but that's if they are used too often or for too long.

 

[paws]

I do wonder about this at times. Back when I was diagnosed (about age 20 in early 80's), my doctor put me on antibiotics full time for preventative measures. Now this practice is frowned upon.

I've also experienced drug induced (antibiotics) pancreatitis three times now. I worry about the long term effect on my pancreas/liver more than anything.

 

[paws]

I do wonder about this at times. Back when I was diagnosed (about age 20 in early 80's), my doctor put me on antibiotics full time for preventative measures. Now this practice is frowned upon.

I've also experienced drug induced (antibiotics) pancreatitis three times now. I worry about the long term effect on my pancreas/liver more than anything.

 

[paws]

I do wonder about this at times. Back when I was diagnosed (about age 20 in early 80's), my doctor put me on antibiotics full time for preventative measures. Now this practice is frowned upon.

I've also experienced drug induced (antibiotics) pancreatitis three times now. I worry about the long term effect on my pancreas/liver more than anything.

 

[paws]

I do wonder about this at times. Back when I was diagnosed (about age 20 in early 80's), my doctor put me on antibiotics full time for preventative measures. Now this practice is frowned upon.

I've also experienced drug induced (antibiotics) pancreatitis three times now. I worry about the long term effect on my pancreas/liver more than anything.

 

[paws]

I do wonder about this at times. Back when I was diagnosed (about age 20 in early 80's), my doctor put me on antibiotics full time for preventative measures. Now this practice is frowned upon.

I've also experienced drug induced (antibiotics) pancreatitis three times now. I worry about the long term effect on my pancreas/liver more than anything.

 

[paws]

I do wonder about this at times. Back when I was diagnosed (about age 20 in early 80's), my doctor put me on antibiotics full time for preventative measures. Now this practice is frowned upon.

I've also experienced drug induced (antibiotics) pancreatitis three times now. I worry about the long term effect on my pancreas/liver more than anything.

 

[Jenica]

I get a little worried about this issue too. Obviously my first concern is keeping Ellie's lungs as healthy as possible for as long as possible, but I sometimes wonder if long-term effects of medications are being taken into account. Especially considering that it is only recently that long-term effects were even an issue at all. (And yeay that they are!)

Ellie takes Prevacid twice daily to help her better digest her enzymes. Although I can certainly see the benefit of that, I'm not entirely comfortable with this either, considering how rough Prevacid is on your system. Especially on a little one, especially long-term. I'm working really hard at coming to an agreement with Ellie's doctor in scaling this one back. This is a tough, because obviously I want to be working WITH Ellie's CF team. Clearly they know a whole lot more than me, but I also think that they aren't always open-minded about considering other ways of controlling things. I've read in more than one place about how apple cider vinegar has been found to have the same sort of effect on the digestive system as acid reflux meds, and I'd really like to give this a try. If it doesn't work, if Ellie's weight alters from her normal growth curve, (if I can't even get her to consume any of it!), I wouldn't just stubbornly stand my ground. I'd just like to get some sort of comparison going ... how her body reacts with AND without it. Or at least without as MUCH of it.

When you're dealing with a disease like CF, I understand that you're going to have to take a "lesser of two evils" approach. I'm a very happy believer and follower of Western medicine, but I also don't want to compromise any part of Ellie's future health if it can be avoided. As more and more CFers are living well into adulthood, middleage and even old age, I think doctors will begin considering long-term effects of all these medicines more. But considering that Ellie is not even two years old, and will likely benefit from all of the research and advancements that are being made every year, I want to set her up for as healthy a future as possible.

 

[Jenica]

I get a little worried about this issue too. Obviously my first concern is keeping Ellie's lungs as healthy as possible for as long as possible, but I sometimes wonder if long-term effects of medications are being taken into account. Especially considering that it is only recently that long-term effects were even an issue at all. (And yeay that they are!)

Ellie takes Prevacid twice daily to help her better digest her enzymes. Although I can certainly see the benefit of that, I'm not entirely comfortable with this either, considering how rough Prevacid is on your system. Especially on a little one, especially long-term. I'm working really hard at coming to an agreement with Ellie's doctor in scaling this one back. This is a tough, because obviously I want to be working WITH Ellie's CF team. Clearly they know a whole lot more than me, but I also think that they aren't always open-minded about considering other ways of controlling things. I've read in more than one place about how apple cider vinegar has been found to have the same sort of effect on the digestive system as acid reflux meds, and I'd really like to give this a try. If it doesn't work, if Ellie's weight alters from her normal growth curve, (if I can't even get her to consume any of it!), I wouldn't just stubbornly stand my ground. I'd just like to get some sort of comparison going ... how her body reacts with AND without it. Or at least without as MUCH of it.

When you're dealing with a disease like CF, I understand that you're going to have to take a "lesser of two evils" approach. I'm a very happy believer and follower of Western medicine, but I also don't want to compromise any part of Ellie's future health if it can be avoided. As more and more CFers are living well into adulthood, middleage and even old age, I think doctors will begin considering long-term effects of all these medicines more. But considering that Ellie is not even two years old, and will likely benefit from all of the research and advancements that are being made every year, I want to set her up for as healthy a future as possible.

 

[Jenica]

I get a little worried about this issue too. Obviously my first concern is keeping Ellie's lungs as healthy as possible for as long as possible, but I sometimes wonder if long-term effects of medications are being taken into account. Especially considering that it is only recently that long-term effects were even an issue at all. (And yeay that they are!)

Ellie takes Prevacid twice daily to help her better digest her enzymes. Although I can certainly see the benefit of that, I'm not entirely comfortable with this either, considering how rough Prevacid is on your system. Especially on a little one, especially long-term. I'm working really hard at coming to an agreement with Ellie's doctor in scaling this one back. This is a tough, because obviously I want to be working WITH Ellie's CF team. Clearly they know a whole lot more than me, but I also think that they aren't always open-minded about considering other ways of controlling things. I've read in more than one place about how apple cider vinegar has been found to have the same sort of effect on the digestive system as acid reflux meds, and I'd really like to give this a try. If it doesn't work, if Ellie's weight alters from her normal growth curve, (if I can't even get her to consume any of it!), I wouldn't just stubbornly stand my ground. I'd just like to get some sort of comparison going ... how her body reacts with AND without it. Or at least without as MUCH of it.

When you're dealing with a disease like CF, I understand that you're going to have to take a "lesser of two evils" approach. I'm a very happy believer and follower of Western medicine, but I also don't want to compromise any part of Ellie's future health if it can be avoided. As more and more CFers are living well into adulthood, middleage and even old age, I think doctors will begin considering long-term effects of all these medicines more. But considering that Ellie is not even two years old, and will likely benefit from all of the research and advancements that are being made every year, I want to set her up for as healthy a future as possible.

 

[Jenica]

I get a little worried about this issue too. Obviously my first concern is keeping Ellie's lungs as healthy as possible for as long as possible, but I sometimes wonder if long-term effects of medications are being taken into account. Especially considering that it is only recently that long-term effects were even an issue at all. (And yeay that they are!)

Ellie takes Prevacid twice daily to help her better digest her enzymes. Although I can certainly see the benefit of that, I'm not entirely comfortable with this either, considering how rough Prevacid is on your system. Especially on a little one, especially long-term. I'm working really hard at coming to an agreement with Ellie's doctor in scaling this one back. This is a tough, because obviously I want to be working WITH Ellie's CF team. Clearly they know a whole lot more than me, but I also think that they aren't always open-minded about considering other ways of controlling things. I've read in more than one place about how apple cider vinegar has been found to have the same sort of effect on the digestive system as acid reflux meds, and I'd really like to give this a try. If it doesn't work, if Ellie's weight alters from her normal growth curve, (if I can't even get her to consume any of it!), I wouldn't just stubbornly stand my ground. I'd just like to get some sort of comparison going ... how her body reacts with AND without it. Or at least without as MUCH of it.

When you're dealing with a disease like CF, I understand that you're going to have to take a "lesser of two evils" approach. I'm a very happy believer and follower of Western medicine, but I also don't want to compromise any part of Ellie's future health if it can be avoided. As more and more CFers are living well into adulthood, middleage and even old age, I think doctors will begin considering long-term effects of all these medicines more. But considering that Ellie is not even two years old, and will likely benefit from all of the research and advancements that are being made every year, I want to set her up for as healthy a future as possible.

 

[Jenica]

I get a little worried about this issue too. Obviously my first concern is keeping Ellie's lungs as healthy as possible for as long as possible, but I sometimes wonder if long-term effects of medications are being taken into account. Especially considering that it is only recently that long-term effects were even an issue at all. (And yeay that they are!)

Ellie takes Prevacid twice daily to help her better digest her enzymes. Although I can certainly see the benefit of that, I'm not entirely comfortable with this either, considering how rough Prevacid is on your system. Especially on a little one, especially long-term. I'm working really hard at coming to an agreement with Ellie's doctor in scaling this one back. This is a tough, because obviously I want to be working WITH Ellie's CF team. Clearly they know a whole lot more than me, but I also think that they aren't always open-minded about considering other ways of controlling things. I've read in more than one place about how apple cider vinegar has been found to have the same sort of effect on the digestive system as acid reflux meds, and I'd really like to give this a try. If it doesn't work, if Ellie's weight alters from her normal growth curve, (if I can't even get her to consume any of it!), I wouldn't just stubbornly stand my ground. I'd just like to get some sort of comparison going ... how her body reacts with AND without it. Or at least without as MUCH of it.

When you're dealing with a disease like CF, I understand that you're going to have to take a "lesser of two evils" approach. I'm a very happy believer and follower of Western medicine, but I also don't want to compromise any part of Ellie's future health if it can be avoided. As more and more CFers are living well into adulthood, middleage and even old age, I think doctors will begin considering long-term effects of all these medicines more. But considering that Ellie is not even two years old, and will likely benefit from all of the research and advancements that are being made every year, I want to set her up for as healthy a future as possible.

 

[Jenica]

I get a little worried about this issue too. Obviously my first concern is keeping Ellie's lungs as healthy as possible for as long as possible, but I sometimes wonder if long-term effects of medications are being taken into account. Especially considering that it is only recently that long-term effects were even an issue at all. (And yeay that they are!)

Ellie takes Prevacid twice daily to help her better digest her enzymes. Although I can certainly see the benefit of that, I'm not entirely comfortable with this either, considering how rough Prevacid is on your system. Especially on a little one, especially long-term. I'm working really hard at coming to an agreement with Ellie's doctor in scaling this one back. This is a tough, because obviously I want to be working WITH Ellie's CF team. Clearly they know a whole lot more than me, but I also think that they aren't always open-minded about considering other ways of controlling things. I've read in more than one place about how apple cider vinegar has been found to have the same sort of effect on the digestive system as acid reflux meds, and I'd really like to give this a try. If it doesn't work, if Ellie's weight alters from her normal growth curve, (if I can't even get her to consume any of it!), I wouldn't just stubbornly stand my ground. I'd just like to get some sort of comparison going ... how her body reacts with AND without it. Or at least without as MUCH of it.

When you're dealing with a disease like CF, I understand that you're going to have to take a "lesser of two evils" approach. I'm a very happy believer and follower of Western medicine, but I also don't want to compromise any part of Ellie's future health if it can be avoided. As more and more CFers are living well into adulthood, middleage and even old age, I think doctors will begin considering long-term effects of all these medicines more. But considering that Ellie is not even two years old, and will likely benefit from all of the research and advancements that are being made every year, I want to set her up for as healthy a future as possible.