Re: [igan]Rob update/PIERRE

[Guest guest]

Hi

I'm used to different opinions. At dialysis, there are about 20 different

nephrologists who take turns doing rounds, and each one has a different

approach. If I ask each one the same thing over a period of a year, I'm very

likely to get 20 different answers : )

Pierre

Re: Rob update/PIERRE

>

> Pierre:

> As usual, excellent advice and explanations.

> I did fully understand that a prescribed drug holiday was ok. However,

> you are correct, he did not explain this well, especially since he was

> talking to Rob, and mentioned other patients not taking their meds when

> they are supposed to.

> Rob is on other meds for his arthritis and asthma, and we surely do not

> want him to stop taking those, or any other meds, without the doctor

> definately saying so. It was just that I felt he was encouraging a

> nonchalant attitude about taking meds on Rob's part.

> Thank you so much for your take on the situation!! I love getting a

> different perspective!

> , mom to Rob, 15

>

> On Fri, 31 Dec 2004 08:54:10 -0500 " Pierre Lachaine "

> writes:

> To play devil's advocate just for a minute...

>

> I've been on " drug holidays " myself a number of times in the past during

> the

> 1990's - doctor's orders. You know, while an ACE inhibitor does reduce

> proteinuria, it also worsens kidney function a bit as it does it. In some

> patients, hopefully a very small minority, it can worsen kidney function

> by

> more than 30%, to the point that some people actually have to stop taking

> it. Some people have actually had acute kidney failure from taking an ACE

> inhibitor. Sometimes, it might be appropriate to see how a patient does

> without the drug, if something like this might be suspected. Sometimes it

> needs to be stopped because it just raises potassium too much.

>

> When you stop taking an ACE inhibitor, it's not like stopping some other

> BP

> meds. The blood pressure just goes back up to where it normally sits

> without

> medication. There's no dramatic rebound or anything like that. So, if a

> person doesn't have severely-elevated BP to begin with, a drug holiday

> should be perfectly safe. Sometimes, a drug holiday is forced on the

> person

> for another reason: drug washout. There are times when it might be

> necessary

> to stop taking a BP med for 2 or 3 weeks, long enough for it to washout

> completely, before trying another one.

>

> I don't think patients on BP meds should take drug holidays on their own,

> but if the doc says to stop taking it for a couple of weeks, that's a

> different story.

>

> One thing to remember about proteinuria is that there is a lot of natural

> variability there. It can go up, and then, it just resolves itself,

> medication or no medication. So, it's not like stopping the ACE inhibitor

> for a while will automatically cause a big jump.

>

> I can understand you being upset, but could it be that the nephrologist

> just

> didn't explain his intentions well? Of course, encouraging someone to not

> take a med on their own whenever they want is a different story.

>

> Pierre

>

>

>

[Guest guest]

Pierre:

As usual, excellent advice and explanations.

I did fully understand that a prescribed drug holiday was ok. However,

you are correct, he did not explain this well, especially since he was

talking to Rob, and mentioned other patients not taking their meds when

they are supposed to.

Rob is on other meds for his arthritis and asthma, and we surely do not

want him to stop taking those, or any other meds, without the doctor

definately saying so. It was just that I felt he was encouraging a

nonchalant attitude about taking meds on Rob's part.

Thank you so much for your take on the situation!! I love getting a

different perspective!

, mom to Rob, 15

On Fri, 31 Dec 2004 08:54:10 -0500 " Pierre Lachaine "

writes:

To play devil's advocate just for a minute...

I've been on " drug holidays " myself a number of times in the past during

the

1990's - doctor's orders. You know, while an ACE inhibitor does reduce

proteinuria, it also worsens kidney function a bit as it does it. In some

patients, hopefully a very small minority, it can worsen kidney function

by

more than 30%, to the point that some people actually have to stop taking

it. Some people have actually had acute kidney failure from taking an ACE

inhibitor. Sometimes, it might be appropriate to see how a patient does

without the drug, if something like this might be suspected. Sometimes it

needs to be stopped because it just raises potassium too much.

When you stop taking an ACE inhibitor, it's not like stopping some other

BP

meds. The blood pressure just goes back up to where it normally sits

without

medication. There's no dramatic rebound or anything like that. So, if a

person doesn't have severely-elevated BP to begin with, a drug holiday

should be perfectly safe. Sometimes, a drug holiday is forced on the

person

for another reason: drug washout. There are times when it might be

necessary

to stop taking a BP med for 2 or 3 weeks, long enough for it to washout

completely, before trying another one.

I don't think patients on BP meds should take drug holidays on their own,

but if the doc says to stop taking it for a couple of weeks, that's a

different story.

One thing to remember about proteinuria is that there is a lot of natural

variability there. It can go up, and then, it just resolves itself,

medication or no medication. So, it's not like stopping the ACE inhibitor

for a while will automatically cause a big jump.

I can understand you being upset, but could it be that the nephrologist

just

didn't explain his intentions well? Of course, encouraging someone to not

take a med on their own whenever they want is a different story.

Pierre

Re: Rob update

>

> I'm sorry I haven't been responding or posting very much. I do try to

> read the posts, but have had trouble keeping up. I finally was able to

> get a new computer, so that problem is solved. Unfortunately, the other

> admissions nurse in my department was suspended, and then had a

scheduled

> vacation, so I have been working and on call for the last 10 out of 11

> days. It has been very hectic.

> I did get Tuesday off to take Rob to his rheumatology and nephrology

> appts.

> Rob's regular nephrologist was out of town. I just love this doctor,

Dr.

> Devarajan. He is wonderful. Unfortunately, we had to go on and schedule

> with another nephrologist in the group, because we have to travel 120

> miles to the appts for rheumy and neph, and I do not like to take Rob

out

> of school, so I wanted him to be seen during Christmas break.

> This nephrologist, who had never seen Rob before, made me so mad I

> thought I was going to blow a gasket!

> We did have great news, the Cozaar is continuing to control the protein

> and blood in his urine. We were so happy to hear about that!

> The neph, on the other hand....started talking to Rob about how

> proteinuria damages the kidneys. Then, he says, at some point, Rob

could

> go off the Cozaar just to see if the hematuria and proteinuria would

> still occur. This led him into talking about how he knows that lots of

> patients don't take their meds, and its ok if they do that, and he

could

> take a drug holiday during the summer, and just see what happens!! Rob,

> of course, absolutely LOVED this idea. I was livid! I looked the neph

> squarely in the eye, and said, I CANNOT BELIEVE that you just told an

> ADOLESCENT that its ok not to take meds! He hemmed and hawed around,

and

> then asked me if I was interested in having a definitive diagnosis. I

> told him that Dr. D. was fairly sure of the Alport's diagnosis, and

that

> Dr. Kashtan of U Minn agreed, and he poo pooed that too. Of course, he

> had not even gone completely through Robs chart and I had to fill him

in

> on many things. But, it was like he was out to undermine everything

that

> had taken place! Granted, it would be wonderful if Rob didn't have

> Alports, but the biopsy clearly showed irregularities, and there is no

> other explanation for what he has, other than diabetic nephropathy, and

> we know he is not diabetic. So this guy was absolutely irritating and

> maddening! I have been waiting to calm down (but I find that I just

keep

> getting madder!), I plan to email Dr. D and tell him just how disgusted

I

> was about what he told Rob. It is hard enough to get a teenager to take

> his meds, and Rob also has an exercise regimen he must do to keep

things

> limber (because of the ankylosing spondylitis). He faces his spine

fusing

> in about 10 years. It is imperative that he diligently exercise in

order

> to prevent it fusing in a 'bad' position. Meds are the one thing Rob

has

> been compliant with, but the exercises, no. But at least he is

compliant

> with meds, that is until Dr. 'HELPFUL' told him no need!

> The rheumy did read Rob the riot act about the exercises, so at least

> SOMEONE cares if he is compliant!!

> Ok, thanks for listening!

> , mom to Rob, 15

>

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

To unsubcribe via email,

iga-nephropathy-unsubscribe

Visit our companion website at www.igan.ca. The site is entirely

supported by donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

[Guest guest]

Pierre:

As usual, excellent advice and explanations.

I did fully understand that a prescribed drug holiday was ok. However,

you are correct, he did not explain this well, especially since he was

talking to Rob, and mentioned other patients not taking their meds when

they are supposed to.

Rob is on other meds for his arthritis and asthma, and we surely do not

want him to stop taking those, or any other meds, without the doctor

definately saying so. It was just that I felt he was encouraging a

nonchalant attitude about taking meds on Rob's part.

Thank you so much for your take on the situation!! I love getting a

different perspective!

, mom to Rob, 15

On Fri, 31 Dec 2004 08:54:10 -0500 " Pierre Lachaine "

writes:

To play devil's advocate just for a minute...

I've been on " drug holidays " myself a number of times in the past during

the

1990's - doctor's orders. You know, while an ACE inhibitor does reduce

proteinuria, it also worsens kidney function a bit as it does it. In some

patients, hopefully a very small minority, it can worsen kidney function

by

more than 30%, to the point that some people actually have to stop taking

it. Some people have actually had acute kidney failure from taking an ACE

inhibitor. Sometimes, it might be appropriate to see how a patient does

without the drug, if something like this might be suspected. Sometimes it

needs to be stopped because it just raises potassium too much.

When you stop taking an ACE inhibitor, it's not like stopping some other

BP

meds. The blood pressure just goes back up to where it normally sits

without

medication. There's no dramatic rebound or anything like that. So, if a

person doesn't have severely-elevated BP to begin with, a drug holiday

should be perfectly safe. Sometimes, a drug holiday is forced on the

person

for another reason: drug washout. There are times when it might be

necessary

to stop taking a BP med for 2 or 3 weeks, long enough for it to washout

completely, before trying another one.

I don't think patients on BP meds should take drug holidays on their own,

but if the doc says to stop taking it for a couple of weeks, that's a

different story.

One thing to remember about proteinuria is that there is a lot of natural

variability there. It can go up, and then, it just resolves itself,

medication or no medication. So, it's not like stopping the ACE inhibitor

for a while will automatically cause a big jump.

I can understand you being upset, but could it be that the nephrologist

just

didn't explain his intentions well? Of course, encouraging someone to not

take a med on their own whenever they want is a different story.

Pierre

Re: Rob update

>

> I'm sorry I haven't been responding or posting very much. I do try to

> read the posts, but have had trouble keeping up. I finally was able to

> get a new computer, so that problem is solved. Unfortunately, the other

> admissions nurse in my department was suspended, and then had a

scheduled

> vacation, so I have been working and on call for the last 10 out of 11

> days. It has been very hectic.

> I did get Tuesday off to take Rob to his rheumatology and nephrology

> appts.

> Rob's regular nephrologist was out of town. I just love this doctor,

Dr.

> Devarajan. He is wonderful. Unfortunately, we had to go on and schedule

> with another nephrologist in the group, because we have to travel 120

> miles to the appts for rheumy and neph, and I do not like to take Rob

out

> of school, so I wanted him to be seen during Christmas break.

> This nephrologist, who had never seen Rob before, made me so mad I

> thought I was going to blow a gasket!

> We did have great news, the Cozaar is continuing to control the protein

> and blood in his urine. We were so happy to hear about that!

> The neph, on the other hand....started talking to Rob about how

> proteinuria damages the kidneys. Then, he says, at some point, Rob

could

> go off the Cozaar just to see if the hematuria and proteinuria would

> still occur. This led him into talking about how he knows that lots of

> patients don't take their meds, and its ok if they do that, and he

could

> take a drug holiday during the summer, and just see what happens!! Rob,

> of course, absolutely LOVED this idea. I was livid! I looked the neph

> squarely in the eye, and said, I CANNOT BELIEVE that you just told an

> ADOLESCENT that its ok not to take meds! He hemmed and hawed around,

and

> then asked me if I was interested in having a definitive diagnosis. I

> told him that Dr. D. was fairly sure of the Alport's diagnosis, and

that

> Dr. Kashtan of U Minn agreed, and he poo pooed that too. Of course, he

> had not even gone completely through Robs chart and I had to fill him

in

> on many things. But, it was like he was out to undermine everything

that

> had taken place! Granted, it would be wonderful if Rob didn't have

> Alports, but the biopsy clearly showed irregularities, and there is no

> other explanation for what he has, other than diabetic nephropathy, and

> we know he is not diabetic. So this guy was absolutely irritating and

> maddening! I have been waiting to calm down (but I find that I just

keep

> getting madder!), I plan to email Dr. D and tell him just how disgusted

I

> was about what he told Rob. It is hard enough to get a teenager to take

> his meds, and Rob also has an exercise regimen he must do to keep

things

> limber (because of the ankylosing spondylitis). He faces his spine

fusing

> in about 10 years. It is imperative that he diligently exercise in

order

> to prevent it fusing in a 'bad' position. Meds are the one thing Rob

has

> been compliant with, but the exercises, no. But at least he is

compliant

> with meds, that is until Dr. 'HELPFUL' told him no need!

> The rheumy did read Rob the riot act about the exercises, so at least

> SOMEONE cares if he is compliant!!

> Ok, thanks for listening!

> , mom to Rob, 15

>

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

To unsubcribe via email,

iga-nephropathy-unsubscribe

Visit our companion website at www.igan.ca. The site is entirely

supported by donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

[Guest guest]

Pierre:

As usual, excellent advice and explanations.

I did fully understand that a prescribed drug holiday was ok. However,

you are correct, he did not explain this well, especially since he was

talking to Rob, and mentioned other patients not taking their meds when

they are supposed to.

Rob is on other meds for his arthritis and asthma, and we surely do not

want him to stop taking those, or any other meds, without the doctor

definately saying so. It was just that I felt he was encouraging a

nonchalant attitude about taking meds on Rob's part.

Thank you so much for your take on the situation!! I love getting a

different perspective!

, mom to Rob, 15

On Fri, 31 Dec 2004 08:54:10 -0500 " Pierre Lachaine "

writes:

To play devil's advocate just for a minute...

I've been on " drug holidays " myself a number of times in the past during

the

1990's - doctor's orders. You know, while an ACE inhibitor does reduce

proteinuria, it also worsens kidney function a bit as it does it. In some

patients, hopefully a very small minority, it can worsen kidney function

by

more than 30%, to the point that some people actually have to stop taking

it. Some people have actually had acute kidney failure from taking an ACE

inhibitor. Sometimes, it might be appropriate to see how a patient does

without the drug, if something like this might be suspected. Sometimes it

needs to be stopped because it just raises potassium too much.

When you stop taking an ACE inhibitor, it's not like stopping some other

BP

meds. The blood pressure just goes back up to where it normally sits

without

medication. There's no dramatic rebound or anything like that. So, if a

person doesn't have severely-elevated BP to begin with, a drug holiday

should be perfectly safe. Sometimes, a drug holiday is forced on the

person

for another reason: drug washout. There are times when it might be

necessary

to stop taking a BP med for 2 or 3 weeks, long enough for it to washout

completely, before trying another one.

I don't think patients on BP meds should take drug holidays on their own,

but if the doc says to stop taking it for a couple of weeks, that's a

different story.

One thing to remember about proteinuria is that there is a lot of natural

variability there. It can go up, and then, it just resolves itself,

medication or no medication. So, it's not like stopping the ACE inhibitor

for a while will automatically cause a big jump.

I can understand you being upset, but could it be that the nephrologist

just

didn't explain his intentions well? Of course, encouraging someone to not

take a med on their own whenever they want is a different story.

Pierre

Re: Rob update

>

> I'm sorry I haven't been responding or posting very much. I do try to

> read the posts, but have had trouble keeping up. I finally was able to

> get a new computer, so that problem is solved. Unfortunately, the other

> admissions nurse in my department was suspended, and then had a

scheduled

> vacation, so I have been working and on call for the last 10 out of 11

> days. It has been very hectic.

> I did get Tuesday off to take Rob to his rheumatology and nephrology

> appts.

> Rob's regular nephrologist was out of town. I just love this doctor,

Dr.

> Devarajan. He is wonderful. Unfortunately, we had to go on and schedule

> with another nephrologist in the group, because we have to travel 120

> miles to the appts for rheumy and neph, and I do not like to take Rob

out

> of school, so I wanted him to be seen during Christmas break.

> This nephrologist, who had never seen Rob before, made me so mad I

> thought I was going to blow a gasket!

> We did have great news, the Cozaar is continuing to control the protein

> and blood in his urine. We were so happy to hear about that!

> The neph, on the other hand....started talking to Rob about how

> proteinuria damages the kidneys. Then, he says, at some point, Rob

could

> go off the Cozaar just to see if the hematuria and proteinuria would

> still occur. This led him into talking about how he knows that lots of

> patients don't take their meds, and its ok if they do that, and he

could

> take a drug holiday during the summer, and just see what happens!! Rob,

> of course, absolutely LOVED this idea. I was livid! I looked the neph

> squarely in the eye, and said, I CANNOT BELIEVE that you just told an

> ADOLESCENT that its ok not to take meds! He hemmed and hawed around,

and

> then asked me if I was interested in having a definitive diagnosis. I

> told him that Dr. D. was fairly sure of the Alport's diagnosis, and

that

> Dr. Kashtan of U Minn agreed, and he poo pooed that too. Of course, he

> had not even gone completely through Robs chart and I had to fill him

in

> on many things. But, it was like he was out to undermine everything

that

> had taken place! Granted, it would be wonderful if Rob didn't have

> Alports, but the biopsy clearly showed irregularities, and there is no

> other explanation for what he has, other than diabetic nephropathy, and

> we know he is not diabetic. So this guy was absolutely irritating and

> maddening! I have been waiting to calm down (but I find that I just

keep

> getting madder!), I plan to email Dr. D and tell him just how disgusted

I

> was about what he told Rob. It is hard enough to get a teenager to take

> his meds, and Rob also has an exercise regimen he must do to keep

things

> limber (because of the ankylosing spondylitis). He faces his spine

fusing

> in about 10 years. It is imperative that he diligently exercise in

order

> to prevent it fusing in a 'bad' position. Meds are the one thing Rob

has

> been compliant with, but the exercises, no. But at least he is

compliant

> with meds, that is until Dr. 'HELPFUL' told him no need!

> The rheumy did read Rob the riot act about the exercises, so at least

> SOMEONE cares if he is compliant!!

> Ok, thanks for listening!

> , mom to Rob, 15

>

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

To unsubcribe via email,

iga-nephropathy-unsubscribe

Visit our companion website at www.igan.ca. The site is entirely

supported by donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you