Re: Beth

[Guest guest]

,

I know. That's the reason I consider seemingly unattractive options like this. If the cytoxan (or whatever other med happens to be on the table) will actually do me some good over the long term, I will gladly take short term discomfort, pain, suffering etc. Unfortunately there are never any guarantees. It almost always involves a leap of faith and hope doesn't it?

I'll be thinking of you on 1/15!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: Breathe-Support Sent: Tuesday, December 16, 2008 5:49:33 PMSubject: Beth

BethMaybe if the scarring is stopped 1 month of puking at first and 2months of feeling terrible at the end and 3 months of not so bad in between isnt so bad . The ct scan on 1/15 will tell. Good luck with your decision. IPF Scleroderma sjogrens and raynauds 4/08 IL

[Guest guest]

Amy,

I did see your post. Lasix as I said is a powerful diuretic and the 160mg you are on strikes me as a pretty high dose. When I was on Lasix I was only on 40mg once a day along with a potassium supplement. My doctor at the time had ordered bloodwork done every other week to monitor my sodium and potassium levels (among other things). So I was very closely watched and the dose I was taking was 1/4 of what you're taking.

Were you taking any type of potassium supplement (as I think Jon had mentioned was necessary)? Was your doctor doing any type of bloodwork to keep track of your blood chemistry?

I know I can get kind of boring on this subject but it is a really good idea to cultivate a relationship with our pharmacist. Have all your prescriptions filled at the same pharmacy so all your records are in one place. Anytime we pick up a new prescription from the pharmacy we should ask to speak to the pharmacist. Don't just pay for it and leave. Ask if there's anything you should know about this drug. Tell them what other drugs you're on and ask if there are drug interactions to be aware of. These folks are highly educated professionals. They aren't just pill counters. Pharmacy school programs are 4-5 years of education beyond a bachelors degree. My point is when we're dealing with powerful drugs and multiple drugs a pharmacist who is familiar with our situation is an important ally.

Amy, you might want to have a discussion with your doctor about what kind of monitoring could have prevented your situation. You are entitled to some honest answers!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: breathe <Breathe-support >Sent: Thursday, December 18, 2008 4:35:35 PMSubject: Beth

Hi Beth: I do not know if you saw my post re: my sodium down to 112 and being rushed to the hospital. I since found out that too much water is bad. However I remember you saying something about lasix being powerful etc. I was on 160 a day and another one for two days. Don't you think they should of monitored my blood each day or every other day. 112 is life threatening and I cannot help thinking it could of been avoided. I would love your input or anyone else that has experienced this.

Thanks,

Amy

[Guest guest]

Amy,

I did see your post. Lasix as I said is a powerful diuretic and the 160mg you are on strikes me as a pretty high dose. When I was on Lasix I was only on 40mg once a day along with a potassium supplement. My doctor at the time had ordered bloodwork done every other week to monitor my sodium and potassium levels (among other things). So I was very closely watched and the dose I was taking was 1/4 of what you're taking.

Were you taking any type of potassium supplement (as I think Jon had mentioned was necessary)? Was your doctor doing any type of bloodwork to keep track of your blood chemistry?

I know I can get kind of boring on this subject but it is a really good idea to cultivate a relationship with our pharmacist. Have all your prescriptions filled at the same pharmacy so all your records are in one place. Anytime we pick up a new prescription from the pharmacy we should ask to speak to the pharmacist. Don't just pay for it and leave. Ask if there's anything you should know about this drug. Tell them what other drugs you're on and ask if there are drug interactions to be aware of. These folks are highly educated professionals. They aren't just pill counters. Pharmacy school programs are 4-5 years of education beyond a bachelors degree. My point is when we're dealing with powerful drugs and multiple drugs a pharmacist who is familiar with our situation is an important ally.

Amy, you might want to have a discussion with your doctor about what kind of monitoring could have prevented your situation. You are entitled to some honest answers!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: breathe <Breathe-support >Sent: Thursday, December 18, 2008 4:35:35 PMSubject: Beth

Hi Beth: I do not know if you saw my post re: my sodium down to 112 and being rushed to the hospital. I since found out that too much water is bad. However I remember you saying something about lasix being powerful etc. I was on 160 a day and another one for two days. Don't you think they should of monitored my blood each day or every other day. 112 is life threatening and I cannot help thinking it could of been avoided. I would love your input or anyone else that has experienced this.

Thanks,

Amy

[Guest guest]

Amy,

I did see your post. Lasix as I said is a powerful diuretic and the 160mg you are on strikes me as a pretty high dose. When I was on Lasix I was only on 40mg once a day along with a potassium supplement. My doctor at the time had ordered bloodwork done every other week to monitor my sodium and potassium levels (among other things). So I was very closely watched and the dose I was taking was 1/4 of what you're taking.

Were you taking any type of potassium supplement (as I think Jon had mentioned was necessary)? Was your doctor doing any type of bloodwork to keep track of your blood chemistry?

I know I can get kind of boring on this subject but it is a really good idea to cultivate a relationship with our pharmacist. Have all your prescriptions filled at the same pharmacy so all your records are in one place. Anytime we pick up a new prescription from the pharmacy we should ask to speak to the pharmacist. Don't just pay for it and leave. Ask if there's anything you should know about this drug. Tell them what other drugs you're on and ask if there are drug interactions to be aware of. These folks are highly educated professionals. They aren't just pill counters. Pharmacy school programs are 4-5 years of education beyond a bachelors degree. My point is when we're dealing with powerful drugs and multiple drugs a pharmacist who is familiar with our situation is an important ally.

Amy, you might want to have a discussion with your doctor about what kind of monitoring could have prevented your situation. You are entitled to some honest answers!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: breathe <Breathe-support >Sent: Thursday, December 18, 2008 4:35:35 PMSubject: Beth

Hi Beth: I do not know if you saw my post re: my sodium down to 112 and being rushed to the hospital. I since found out that too much water is bad. However I remember you saying something about lasix being powerful etc. I was on 160 a day and another one for two days. Don't you think they should of monitored my blood each day or every other day. 112 is life threatening and I cannot help thinking it could of been avoided. I would love your input or anyone else that has experienced this.

Thanks,

Amy

[Guest guest]

You are so right about the pharm. I will start that, thank you. No he did not put me on pot and 2 weeks ago my blood was normal (sodium pot etc) for two days I was also on a pot sparring diuretic then I called his office and said I was feeling wierd they said stop the extra one I had an appt on tues this was monday and he was going to order blood on tues. Well I am sorry to say the two weeks in between on the high of a dose and not to have labs is unaceptable and I am going to ask why also I learned about water intox. I guess I was diluting all my sodium even more. I think it is a shame we have to police our drs but I will address this, it was just too scary.

Amy

To: Breathe-Support Sent: Thursday, December 18, 2008 4:56:20 PMSubject: Re: Beth

Amy,

I did see your post. Lasix as I said is a powerful diuretic and the 160mg you are on strikes me as a pretty high dose. When I was on Lasix I was only on 40mg once a day along with a potassium supplement. My doctor at the time had ordered bloodwork done every other week to monitor my sodium and potassium levels (among other things). So I was very closely watched and the dose I was taking was 1/4 of what you're taking.

Were you taking any type of potassium supplement (as I think Jon had mentioned was necessary)? Was your doctor doing any type of bloodwork to keep track of your blood chemistry?

I know I can get kind of boring on this subject but it is a really good idea to cultivate a relationship with our pharmacist. Have all your prescriptions filled at the same pharmacy so all your records are in one place. Anytime we pick up a new prescription from the pharmacy we should ask to speak to the pharmacist. Don't just pay for it and leave. Ask if there's anything you should know about this drug. Tell them what other drugs you're on and ask if there are drug interactions to be aware of. These folks are highly educated professionals. They aren't just pill counters. Pharmacy school programs are 4-5 years of education beyond a bachelors degree. My point is when we're dealing with powerful drugs and multiple drugs a pharmacist who is familiar with our situation is an important ally.

Amy, you might want to have a discussion with your doctor about what kind of monitoring could have prevented your situation. You are entitled to some honest answers!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

From: Amy Dawn <amy7675 (AT) yahoo (DOT) com>To: breathe <Breathe-support@ yahoogroups. com>Sent: Thursday, December 18, 2008 4:35:35 PMSubject: Beth

Hi Beth: I do not know if you saw my post re: my sodium down to 112 and being rushed to the hospital. I since found out that too much water is bad. However I remember you saying something about lasix being powerful etc. I was on 160 a day and another one for two days. Don't you think they should of monitored my blood each day or every other day. 112 is life threatening and I cannot help thinking it could of been avoided. I would love your input or anyone else that has experienced this.

Thanks,

Amy

[Guest guest]

You are so right about the pharm. I will start that, thank you. No he did not put me on pot and 2 weeks ago my blood was normal (sodium pot etc) for two days I was also on a pot sparring diuretic then I called his office and said I was feeling wierd they said stop the extra one I had an appt on tues this was monday and he was going to order blood on tues. Well I am sorry to say the two weeks in between on the high of a dose and not to have labs is unaceptable and I am going to ask why also I learned about water intox. I guess I was diluting all my sodium even more. I think it is a shame we have to police our drs but I will address this, it was just too scary.

Amy

To: Breathe-Support Sent: Thursday, December 18, 2008 4:56:20 PMSubject: Re: Beth

Amy,

I did see your post. Lasix as I said is a powerful diuretic and the 160mg you are on strikes me as a pretty high dose. When I was on Lasix I was only on 40mg once a day along with a potassium supplement. My doctor at the time had ordered bloodwork done every other week to monitor my sodium and potassium levels (among other things). So I was very closely watched and the dose I was taking was 1/4 of what you're taking.

Were you taking any type of potassium supplement (as I think Jon had mentioned was necessary)? Was your doctor doing any type of bloodwork to keep track of your blood chemistry?

I know I can get kind of boring on this subject but it is a really good idea to cultivate a relationship with our pharmacist. Have all your prescriptions filled at the same pharmacy so all your records are in one place. Anytime we pick up a new prescription from the pharmacy we should ask to speak to the pharmacist. Don't just pay for it and leave. Ask if there's anything you should know about this drug. Tell them what other drugs you're on and ask if there are drug interactions to be aware of. These folks are highly educated professionals. They aren't just pill counters. Pharmacy school programs are 4-5 years of education beyond a bachelors degree. My point is when we're dealing with powerful drugs and multiple drugs a pharmacist who is familiar with our situation is an important ally.

Amy, you might want to have a discussion with your doctor about what kind of monitoring could have prevented your situation. You are entitled to some honest answers!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

From: Amy Dawn <amy7675 (AT) yahoo (DOT) com>To: breathe <Breathe-support@ yahoogroups. com>Sent: Thursday, December 18, 2008 4:35:35 PMSubject: Beth

Hi Beth: I do not know if you saw my post re: my sodium down to 112 and being rushed to the hospital. I since found out that too much water is bad. However I remember you saying something about lasix being powerful etc. I was on 160 a day and another one for two days. Don't you think they should of monitored my blood each day or every other day. 112 is life threatening and I cannot help thinking it could of been avoided. I would love your input or anyone else that has experienced this.

Thanks,

Amy

[Guest guest]

You are so right about the pharm. I will start that, thank you. No he did not put me on pot and 2 weeks ago my blood was normal (sodium pot etc) for two days I was also on a pot sparring diuretic then I called his office and said I was feeling wierd they said stop the extra one I had an appt on tues this was monday and he was going to order blood on tues. Well I am sorry to say the two weeks in between on the high of a dose and not to have labs is unaceptable and I am going to ask why also I learned about water intox. I guess I was diluting all my sodium even more. I think it is a shame we have to police our drs but I will address this, it was just too scary.

Amy

To: Breathe-Support Sent: Thursday, December 18, 2008 4:56:20 PMSubject: Re: Beth

Amy,

I did see your post. Lasix as I said is a powerful diuretic and the 160mg you are on strikes me as a pretty high dose. When I was on Lasix I was only on 40mg once a day along with a potassium supplement. My doctor at the time had ordered bloodwork done every other week to monitor my sodium and potassium levels (among other things). So I was very closely watched and the dose I was taking was 1/4 of what you're taking.

Were you taking any type of potassium supplement (as I think Jon had mentioned was necessary)? Was your doctor doing any type of bloodwork to keep track of your blood chemistry?

I know I can get kind of boring on this subject but it is a really good idea to cultivate a relationship with our pharmacist. Have all your prescriptions filled at the same pharmacy so all your records are in one place. Anytime we pick up a new prescription from the pharmacy we should ask to speak to the pharmacist. Don't just pay for it and leave. Ask if there's anything you should know about this drug. Tell them what other drugs you're on and ask if there are drug interactions to be aware of. These folks are highly educated professionals. They aren't just pill counters. Pharmacy school programs are 4-5 years of education beyond a bachelors degree. My point is when we're dealing with powerful drugs and multiple drugs a pharmacist who is familiar with our situation is an important ally.

Amy, you might want to have a discussion with your doctor about what kind of monitoring could have prevented your situation. You are entitled to some honest answers!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

From: Amy Dawn <amy7675 (AT) yahoo (DOT) com>To: breathe <Breathe-support@ yahoogroups. com>Sent: Thursday, December 18, 2008 4:35:35 PMSubject: Beth

Hi Beth: I do not know if you saw my post re: my sodium down to 112 and being rushed to the hospital. I since found out that too much water is bad. However I remember you saying something about lasix being powerful etc. I was on 160 a day and another one for two days. Don't you think they should of monitored my blood each day or every other day. 112 is life threatening and I cannot help thinking it could of been avoided. I would love your input or anyone else that has experienced this.

Thanks,

Amy