Re: Re: Pflex, Fenugreek....and anything else

[Guest guest]

Grapefruit is contraindicated after transplant, due to the immunos

I used to take milk thistle, the transplant team informed me in the beginning that it would probably be contraindicated after tx, so i already stopped taking it

I keep a list of all my meds on my computer, including Calcium, vitamins, and otc meds

then i print it out whenever i go to a doctor, so that each doctor knows all of the meds that i take

i even list the meds that i take on an as needed basis

i don't know what fenegreek is, but avoid the health food stores

however, NAC is not on my current prescription plan's formulary

so the doc said I should go to the vitamin shop to buy it and she told me what to look for and how much to take

now instead of spending a bundle on diet coke to kill the taste of NAC, i will spend it on the otc NAC tablets or pills

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: Pflex, Fenugreek....and anything elseTo: Breathe-Support Date: Thursday, March 19, 2009, 10:43 PM

This is just to repeat a warning to everyone that what might seem thesafest choice there is for most of us might not be for others, so pleasediscuss exercise, supplements, vitamins, and anything else with yourdoctor who knows all your conditions and medications. I was taught touse a PFlex during rehab and it's appropriate for me and probably mostothers here. However, it may be too taxing for some with certain issues.As to Fenugreek, it would be contraindicated for many persons on thisforum. The amount customarily used in foods is generally not at issuebut large amounts of the supplement may be a problem with anyone withbleeding or clotting disorders or anyone with diabetes. It can becontraindicated for anyone taking insulin, warfarin, NSAID's and othermeds.When we know that something as simple as grapefruit can change the wayour bodies process medications, that reminds us how complicated it

allcan be. Now, I know we feel reluctant to discuss supplements andalternatives with many doctors, but if you can't discuss everything withyour doctor, maybe thats not the right doctor. The same goes fordiscussing breathing exercises with your pulmonologist and things suchas incentive spirometers and PFlex. It even extends to exercise. Whilewe widely promote the benefit of exercise to each of us, there is alsohuge debate and question within the medical field regarding levels ofexercise for someone with Pulmonary Hypertension. For any of us, theappropriate amount of exercise is an issue. Just because being on thetreadmill 30 minutes at 2.5 mph may be good doesn't necessarily meanthat extending that to 45 minutes and moving up to 3 mph is better. Itmay be worse. All I'm saying is discuss all aspects of your treatment ofyour meds and supplements of your exercise program with your doctors.>>> From: Joyce T Rosenberg pinkrockybeach@ ...> Subject: flonase> To: breathe-support@ yahoogroups. com> Date: Thursday, March 19, 2009, 3:00 PM>>>>>>>>>>>> interesting that when i checked the posts yesterday, several peopletalked about Flonase. It was prescribed to me on Tuesday for post

nasaldrip.>> finally contacted pulmonary doc re: increased cough and funny feelingin top of chest> she prescribed Flonase to use for "3 solid weeks" and then call her> it is already making a difference>> since i am already in the catastrophic phase of the prescription plan,it was only $2.10>> of course i still owe a couple of thousand on my credit card for othermeds>> by the time it gets paid off, it will be time to start all over againl>> glad to read that every one had a great time in orlando> saw the videos, recognized a couple of people>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life Listed 1/09> www.transplantfund. org>

[Guest guest]

Grapefruit is contraindicated after transplant, due to the immunos

I used to take milk thistle, the transplant team informed me in the beginning that it would probably be contraindicated after tx, so i already stopped taking it

I keep a list of all my meds on my computer, including Calcium, vitamins, and otc meds

then i print it out whenever i go to a doctor, so that each doctor knows all of the meds that i take

i even list the meds that i take on an as needed basis

i don't know what fenegreek is, but avoid the health food stores

however, NAC is not on my current prescription plan's formulary

so the doc said I should go to the vitamin shop to buy it and she told me what to look for and how much to take

now instead of spending a bundle on diet coke to kill the taste of NAC, i will spend it on the otc NAC tablets or pills

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: Pflex, Fenugreek....and anything elseTo: Breathe-Support Date: Thursday, March 19, 2009, 10:43 PM

This is just to repeat a warning to everyone that what might seem thesafest choice there is for most of us might not be for others, so pleasediscuss exercise, supplements, vitamins, and anything else with yourdoctor who knows all your conditions and medications. I was taught touse a PFlex during rehab and it's appropriate for me and probably mostothers here. However, it may be too taxing for some with certain issues.As to Fenugreek, it would be contraindicated for many persons on thisforum. The amount customarily used in foods is generally not at issuebut large amounts of the supplement may be a problem with anyone withbleeding or clotting disorders or anyone with diabetes. It can becontraindicated for anyone taking insulin, warfarin, NSAID's and othermeds.When we know that something as simple as grapefruit can change the wayour bodies process medications, that reminds us how complicated it

allcan be. Now, I know we feel reluctant to discuss supplements andalternatives with many doctors, but if you can't discuss everything withyour doctor, maybe thats not the right doctor. The same goes fordiscussing breathing exercises with your pulmonologist and things suchas incentive spirometers and PFlex. It even extends to exercise. Whilewe widely promote the benefit of exercise to each of us, there is alsohuge debate and question within the medical field regarding levels ofexercise for someone with Pulmonary Hypertension. For any of us, theappropriate amount of exercise is an issue. Just because being on thetreadmill 30 minutes at 2.5 mph may be good doesn't necessarily meanthat extending that to 45 minutes and moving up to 3 mph is better. Itmay be worse. All I'm saying is discuss all aspects of your treatment ofyour meds and supplements of your exercise program with your doctors.>>> From: Joyce T Rosenberg pinkrockybeach@ ...> Subject: flonase> To: breathe-support@ yahoogroups. com> Date: Thursday, March 19, 2009, 3:00 PM>>>>>>>>>>>> interesting that when i checked the posts yesterday, several peopletalked about Flonase. It was prescribed to me on Tuesday for post

nasaldrip.>> finally contacted pulmonary doc re: increased cough and funny feelingin top of chest> she prescribed Flonase to use for "3 solid weeks" and then call her> it is already making a difference>> since i am already in the catastrophic phase of the prescription plan,it was only $2.10>> of course i still owe a couple of thousand on my credit card for othermeds>> by the time it gets paid off, it will be time to start all over againl>> glad to read that every one had a great time in orlando> saw the videos, recognized a couple of people>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life Listed 1/09> www.transplantfund. org>

[Guest guest]

Bruce We are dying of a disease that can't be cured because Doctors can't find the cause. Some of us can't afford to run to the Doctor for every symptom and pay through the nose for the prescriptions they blindly throw at the problem A $7.00 box of fenugreek tea bags will do more with far less side effects than flonose a steroid that will destroy your liver and kidneys. Kathy Seweryn IPF 02/15/09

Subject: Re: Pflex, Fenugreek....and anything elseTo: Breathe-Support Date: Thursday, March 19, 2009, 10:43 PM

This is just to repeat a warning to everyone that what might seem thesafest choice there is for most of us might not be for others, so pleasediscuss exercise, supplements, vitamins, and anything else with yourdoctor who knows all your conditions and medications. I was taught touse a PFlex during rehab and it's appropriate for me and probably mostothers here. However, it may be too taxing for some with certain issues.As to Fenugreek, it would be contraindicated for many persons on thisforum. The amount customarily used in foods is generally not at issuebut large amounts of the supplement may be a problem with anyone withbleeding or clotting disorders or anyone with diabetes. It can becontraindicated for anyone taking insulin, warfarin, NSAID's and othermeds.When we know that something as simple as grapefruit can change the wayour bodies process medications, that reminds us how complicated it

allcan be. Now, I know we feel reluctant to discuss supplements andalternatives with many doctors, but if you can't discuss everything withyour doctor, maybe thats not the right doctor. The same goes fordiscussing breathing exercises with your pulmonologist and things suchas incentive spirometers and PFlex. It even extends to exercise. Whilewe widely promote the benefit of exercise to each of us, there is alsohuge debate and question within the medical field regarding levels ofexercise for someone with Pulmonary Hypertension. For any of us, theappropriate amount of exercise is an issue. Just because being on thetreadmill 30 minutes at 2.5 mph may be good doesn't necessarily meanthat extending that to 45 minutes and moving up to 3 mph is better. Itmay be worse. All I'm saying is discuss all aspects of your treatment ofyour meds and supplements of your exercise program with your doctors.>>> From: Joyce T Rosenberg pinkrockybeach@ ...> Subject: flonase> To: breathe-support@ yahoogroups. com> Date: Thursday, March 19, 2009, 3:00

PM>>>>>>>>>>>> interesting that when i checked the posts yesterday, several peopletalked about Flonase. It was prescribed to me on Tuesday for post nasaldrip.>> finally contacted pulmonary doc re: increased cough and funny feelingin top of chest> she prescribed Flonase to use for "3 solid weeks" and then call her> it is already making a difference>> since i am already in the catastrophic phase of the prescription plan,it was only $2.10>> of course i still owe a couple of thousand on my credit card for othermeds>> by the time it gets paid off, it will be time to start all over againl>> glad to read that every one had a great time in orlando> saw the videos, recognized a couple of people>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life

Listed 1/09> www.transplantfund. org>

[Guest guest]

Bruce We are dying of a disease that can't be cured because Doctors can't find the cause. Some of us can't afford to run to the Doctor for every symptom and pay through the nose for the prescriptions they blindly throw at the problem A $7.00 box of fenugreek tea bags will do more with far less side effects than flonose a steroid that will destroy your liver and kidneys. Kathy Seweryn IPF 02/15/09

Subject: Re: Pflex, Fenugreek....and anything elseTo: Breathe-Support Date: Thursday, March 19, 2009, 10:43 PM

This is just to repeat a warning to everyone that what might seem thesafest choice there is for most of us might not be for others, so pleasediscuss exercise, supplements, vitamins, and anything else with yourdoctor who knows all your conditions and medications. I was taught touse a PFlex during rehab and it's appropriate for me and probably mostothers here. However, it may be too taxing for some with certain issues.As to Fenugreek, it would be contraindicated for many persons on thisforum. The amount customarily used in foods is generally not at issuebut large amounts of the supplement may be a problem with anyone withbleeding or clotting disorders or anyone with diabetes. It can becontraindicated for anyone taking insulin, warfarin, NSAID's and othermeds.When we know that something as simple as grapefruit can change the wayour bodies process medications, that reminds us how complicated it

allcan be. Now, I know we feel reluctant to discuss supplements andalternatives with many doctors, but if you can't discuss everything withyour doctor, maybe thats not the right doctor. The same goes fordiscussing breathing exercises with your pulmonologist and things suchas incentive spirometers and PFlex. It even extends to exercise. Whilewe widely promote the benefit of exercise to each of us, there is alsohuge debate and question within the medical field regarding levels ofexercise for someone with Pulmonary Hypertension. For any of us, theappropriate amount of exercise is an issue. Just because being on thetreadmill 30 minutes at 2.5 mph may be good doesn't necessarily meanthat extending that to 45 minutes and moving up to 3 mph is better. Itmay be worse. All I'm saying is discuss all aspects of your treatment ofyour meds and supplements of your exercise program with your doctors.>>> From: Joyce T Rosenberg pinkrockybeach@ ...> Subject: flonase> To: breathe-support@ yahoogroups. com> Date: Thursday, March 19, 2009, 3:00

PM>>>>>>>>>>>> interesting that when i checked the posts yesterday, several peopletalked about Flonase. It was prescribed to me on Tuesday for post nasaldrip.>> finally contacted pulmonary doc re: increased cough and funny feelingin top of chest> she prescribed Flonase to use for "3 solid weeks" and then call her> it is already making a difference>> since i am already in the catastrophic phase of the prescription plan,it was only $2.10>> of course i still owe a couple of thousand on my credit card for othermeds>> by the time it gets paid off, it will be time to start all over againl>> glad to read that every one had a great time in orlando> saw the videos, recognized a couple of people>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life

Listed 1/09> www.transplantfund. org>

[Guest guest]

Kathleen,

While many of us use supplements, herbs, homeopathic remedies or other alternative therapies Bruce is merely trying to make the point that it is best to check with your doctor regarding any possible side effect or drug interaction that you might not be aware of. Fenugreek is commonly known as an anti-inflammatory agent. Given my own rather complex medical situation I would always double check with my doctor before I took something new. Others may make different decisions.We all share things that work for us and we are free to use the board as a buffet, take what we want and leave the rest.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, March 20, 2009 8:54:04 AMSubject: Re: Re: Pflex, Fenugreek....and anything else

Bruce We are dying of a disease that can't be cured because Doctors can't find the cause. Some of us can't afford to run to the Doctor for every symptom and pay through the nose for the prescriptions they blindly throw at the problem A $7.00 box of fenugreek tea bags will do more with far less side effects than flonose a steroid that will destroy your liver and kidneys. Kathy Seweryn IPF 02/15/09

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Pflex, Fenugreek... .and anything elseTo: Breathe-Support@ yahoogroups. comDate: Thursday, March 19, 2009, 10:43 PM

This is just to repeat a warning to everyone that what might seem thesafest choice there is for most of us might not be for others, so pleasediscuss exercise, supplements, vitamins, and anything else with yourdoctor who knows all your conditions and medications. I was taught touse a PFlex during rehab and it's appropriate for me and probably mostothers here. However, it may be too taxing for some with certain issues.As to Fenugreek, it would be contraindicated for many persons on thisforum. The amount customarily used in foods is generally not at issuebut large amounts of the supplement may be a problem with anyone withbleeding or clotting disorders or anyone with diabetes. It can becontraindicated for anyone taking insulin, warfarin, NSAID's and othermeds.When we know that something as simple as grapefruit can change the wayour bodies process medications, that reminds us how complicated it

allcan be. Now, I know we feel reluctant to discuss supplements andalternatives with many doctors, but if you can't discuss everything withyour doctor, maybe thats not the right doctor. The same goes fordiscussing breathing exercises with your pulmonologist and things suchas incentive spirometers and PFlex. It even extends to exercise. Whilewe widely promote the benefit of exercise to each of us, there is alsohuge debate and question within the medical field regarding levels ofexercise for someone with Pulmonary Hypertension. For any of us, theappropriate amount of exercise is an issue. Just because being on thetreadmill 30 minutes at 2.5 mph may be good doesn't necessarily meanthat extending that to 45 minutes and moving up to 3 mph is better. Itmay be worse. All I'm saying is discuss all aspects of your treatment ofyour meds and supplements of your exercise program with your doctors.>>> From: Joyce T Rosenberg pinkrockybeach@ ...> Subject: flonase> To: breathe-support@ yahoogroups. com> Date: Thursday, March 19, 2009, 3:00 PM>>>>>>>>>>>> interesting that when i checked the posts yesterday, several peopletalked about

Flonase. It was prescribed to me on Tuesday for post nasaldrip.>> finally contacted pulmonary doc re: increased cough and funny feelingin top of chest> she prescribed Flonase to use for "3 solid weeks" and then call her> it is already making a difference>> since i am already in the catastrophic phase of the prescription plan,it was only $2.10>> of course i still owe a couple of thousand on my credit card for othermeds>> by the time it gets paid off, it will be time to start all over againl>> glad to read that every one had a great time in orlando> saw the videos, recognized a couple of people>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life Listed 1/09> www.transplantfund. org>

[Guest guest]

What is NAC. Will it help with the coughing? Kathy Seweryn IPF 02/15/09

Subject: Re: Pflex, Fenugreek....and anything elseTo: Breathe-Support Date: Friday, March 20, 2009, 9:28 AM

KathleenI'm not saying fenugreek isn't a reasonable alternative. I am sayingthat it is contraindicated in any significant quantity for many of ourboard members. I'm not referring to the occasional tea but the regulartaking of it. We have patients here who are on warfarin for blood clotsand others with diabetes. Fenugreek can be harmful to those persons. I'mby no means recommending Flonase to all persons either. I'm statingPFlex, which I generally recommend isn't right for some. I don't thinkthere is anyone here who isn't seeing at least one doctor they candiscuss any of these things with.An example of issues such as this that we've had here before is NAC.Many doctors consider it quite harmless and it is available at healthfood stores. Many persons here have felt benefit from it. However,others have had nausea and stomach problems and not realized untilpointed out that it was the

cause.There is no such thing as a universally safe medicine or supplement. Weare all different.> >> >>

> From: Joyce T Rosenberg pinkrockybeach@ ...> > Subject: flonase> > To: breathe-support@ yahoogroups. com> > Date: Thursday, March 19, 2009, 3:00 PM> >> >> >> >> >> >> >> >> >> >> >> > interesting that when i checked the posts yesterday, several people> talked about Flonase. It was prescribed to me on Tuesday for postnasal> drip.> >> > finally contacted pulmonary doc re: increased cough and funnyfeeling> in top of chest> > she prescribed Flonase to use for "3 solid weeks" and then call her> > it is already making a difference> >> > since i am already in the catastrophic phase of the prescriptionplan,> it was only $2.10> >> > of course i still owe a couple of thousand

on my credit card forother> meds> >> > by the time it gets paid off, it will be time to start all overagainl> >> > glad to read that every one had a great time in orlando> > saw the videos, recognized a couple of people> >> >> > Pink Joyce IPF 3/06 Pennsylvania> > Donate Life Listed 1/09> > www.transplantfund. org> >>

[Guest guest]

I like Bruce, his vast knowledge, and how he protects everyone on this board. I got his point, I am just blunt, and feel he is okay with that. Kathy Seweryn IPF 02/15/09

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Pflex, Fenugreek... .and anything elseTo: Breathe-Support@ yahoogroups. comDate: Thursday, March 19, 2009, 10:43 PM

This is just to repeat a warning to everyone that what might seem thesafest choice there is for most of us might not be for others, so pleasediscuss exercise, supplements, vitamins, and anything else with yourdoctor who knows all your conditions and medications. I was taught touse a PFlex during rehab and it's appropriate for me and probably mostothers here. However, it may be too taxing for some with certain issues.As to Fenugreek, it would be contraindicated for many persons on thisforum. The amount customarily used in foods is generally not at issuebut large amounts of the supplement may be a problem with anyone withbleeding or clotting disorders or anyone with diabetes. It can becontraindicated for anyone taking insulin, warfarin, NSAID's and othermeds.When we know that something as simple as grapefruit can change the wayour bodies process medications, that reminds us how complicated it

allcan be. Now, I know we feel reluctant to discuss supplements andalternatives with many doctors, but if you can't discuss everything withyour doctor, maybe thats not the right doctor. The same goes fordiscussing breathing exercises with your pulmonologist and things suchas incentive spirometers and PFlex. It even extends to exercise. Whilewe widely promote the benefit of exercise to each of us, there is alsohuge debate and question within the medical field regarding levels ofexercise for someone with Pulmonary Hypertension. For any of us, theappropriate amount of exercise is an issue. Just because being on thetreadmill 30 minutes at 2.5 mph may be good doesn't necessarily meanthat extending that to 45 minutes and moving up to 3 mph is better. Itmay be worse. All I'm saying is discuss all aspects of your treatment ofyour meds and supplements of your exercise program with your doctors.>>> From: Joyce T Rosenberg pinkrockybeach@ ...> Subject: flonase> To: breathe-support@ yahoogroups. com> Date: Thursday, March 19, 2009, 3:00 PM>>>>>>>>>>>> interesting that when i checked the posts yesterday, several peopletalked about

Flonase. It was prescribed to me on Tuesday for post nasaldrip.>> finally contacted pulmonary doc re: increased cough and funny feelingin top of chest> she prescribed Flonase to use for "3 solid weeks" and then call her> it is already making a difference>> since i am already in the catastrophic phase of the prescription plan,it was only $2.10>> of course i still owe a couple of thousand on my credit card for othermeds>> by the time it gets paid off, it will be time to start all over againl>> glad to read that every one had a great time in orlando> saw the videos, recognized a couple of people>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life Listed 1/09> www.transplantfund.

org>

[Guest guest]

Bruce, can you elaborate on PFlex? Is it an exercise? Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Friday, March 20, 2009 9:28:38 AMSubject: Re: Pflex, Fenugreek....and anything else

KathleenI'm not saying fenugreek isn't a reasonable alternative. I am sayingthat it is contraindicated in any significant quantity for many of ourboard members. I'm not referring to the occasional tea but the regulartaking of it. We have patients here who are on warfarin for blood clotsand others with diabetes. Fenugreek can be harmful to those persons. I'mby no means recommending Flonase to all persons either. I'm statingPFlex, which I generally recommend isn't right for some. I don't thinkthere is anyone here who isn't seeing at least one doctor they candiscuss any of these things with.An example of issues such as this that we've had here before is NAC.Many doctors consider it quite harmless and it is available at healthfood stores. Many persons here have felt benefit from it. However,others have had nausea and stomach problems and not realized untilpointed out that it was the

cause.There is no such thing as a universally safe medicine or supplement. Weare all different.> >> >> > From: Joyce T Rosenberg pinkrockybeach@ ...> > Subject:

flonase> > To: breathe-support@ yahoogroups. com> > Date: Thursday, March 19, 2009, 3:00 PM> >> >> >> >> >> >> >> >> >> >> >> > interesting that when i checked the posts yesterday, several people> talked about Flonase. It was prescribed to me on Tuesday for postnasal> drip..> >> > finally contacted pulmonary doc re: increased cough and funnyfeeling> in top of chest> > she prescribed Flonase to use for "3 solid weeks" and then call her> > it is already making a difference> >> > since i am already in the catastrophic phase of the prescriptionplan,> it was only $2..10> >> > of course i still owe a couple of thousand on my credit card forother> meds> >> >

by the time it gets paid off, it will be time to start all overagainl> >> > glad to read that every one had a great time in orlando> > saw the videos, recognized a couple of people> >> >> > Pink Joyce IPF 3/06 Pennsylvania> > Donate Life Listed 1/09> > www.transplantfund. org> >>

[Guest guest]

Kathleen...it's long been established on the board to be very cautious in giving "medical" advice. Something that works for you may not work for someone else and especially a newbie may try something rather different thinking anyone on the board knows "everything"....

If fenugreek tea works for you that's great but be cautious in advising others to take it.

Your post to Bruce sounds so defensive, when he always researches and gives good information.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

flonase> To: breathe-support@ yahoogroups. com> Date: Thursday, March 19, 2009, 3:00 PM>>>>>>>>>>>> interesting that when i checked the posts yesterday, several peopletalked about Flonase. It was prescribed to me on Tuesday for post nasaldrip.>> finally contacted pulmonary doc re: increased cough and funny feelingin top of chest> she prescribed Flonase to use for "3 solid weeks" and then call her> it is already making a difference>> since i am already in the catastrophic phase of the prescription plan,it was only $2.10>> of course i still owe a couple of thousand on my credit card for othermeds>> by the time it gets paid off, it will be time to start all over againl>> glad to read that every one had a great time in orlando> saw the videos, recognized a couple of people>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life Listed 1/09> www.transplantfund. org>

[Guest guest]

Kathleen...it's long been established on the board to be very cautious in giving "medical" advice. Something that works for you may not work for someone else and especially a newbie may try something rather different thinking anyone on the board knows "everything"....

If fenugreek tea works for you that's great but be cautious in advising others to take it.

Your post to Bruce sounds so defensive, when he always researches and gives good information.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

flonase> To: breathe-support@ yahoogroups. com> Date: Thursday, March 19, 2009, 3:00 PM>>>>>>>>>>>> interesting that when i checked the posts yesterday, several peopletalked about Flonase. It was prescribed to me on Tuesday for post nasaldrip.>> finally contacted pulmonary doc re: increased cough and funny feelingin top of chest> she prescribed Flonase to use for "3 solid weeks" and then call her> it is already making a difference>> since i am already in the catastrophic phase of the prescription plan,it was only $2.10>> of course i still owe a couple of thousand on my credit card for othermeds>> by the time it gets paid off, it will be time to start all over againl>> glad to read that every one had a great time in orlando> saw the videos, recognized a couple of people>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life Listed 1/09> www.transplantfund. org>

[Guest guest]

Kathleen...How do you know Bruce 'is okay with that'? Did you ask him?

I think you are too often 'blunt' and defensive when not agreed with...chill out a little, for all of us.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

flonase> To: breathe-support@ yahoogroups. com> Date: Thursday, March 19, 2009, 3:00 PM>>>>>>>>>>>> interesting that when i checked the posts yesterday, several peopletalked about Flonase. It was prescribed to me on Tuesday for post nasaldrip.>> finally contacted pulmonary doc re: increased cough and funny feelingin top of chest> she prescribed Flonase to use for "3 solid weeks" and then call her> it is already making a difference>> since i am already in the catastrophic phase of the prescription plan,it was only $2.10>> of course i still owe a couple of thousand on my credit card for othermeds>> by the time it gets paid off, it will be time to start all over againl>> glad to read that every one had a great time in orlando> saw the videos, recognized a couple of people>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life Listed 1/09> www.transplantfund. org>

[Guest guest]

Kathleen...How do you know Bruce 'is okay with that'? Did you ask him?

I think you are too often 'blunt' and defensive when not agreed with...chill out a little, for all of us.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

flonase> To: breathe-support@ yahoogroups. com> Date: Thursday, March 19, 2009, 3:00 PM>>>>>>>>>>>> interesting that when i checked the posts yesterday, several peopletalked about Flonase. It was prescribed to me on Tuesday for post nasaldrip.>> finally contacted pulmonary doc re: increased cough and funny feelingin top of chest> she prescribed Flonase to use for "3 solid weeks" and then call her> it is already making a difference>> since i am already in the catastrophic phase of the prescription plan,it was only $2.10>> of course i still owe a couple of thousand on my credit card for othermeds>> by the time it gets paid off, it will be time to start all over againl>> glad to read that every one had a great time in orlando> saw the videos, recognized a couple of people>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life Listed 1/09> www.transplantfund. org>

[Guest guest]

Thanks, Bruce. I do work daily with Spirometer. I usually hit 2500, although the chart gives 2000 for a man of my age. I am hoping to go beyond the 2500. It pretty well matches my PFT for the last 4 0r 5 years. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Friday, March 20, 2009 2:49:48 PMSubject: Re: Pflex, Fenugreek....and anything else

JackIn rehab most of us were introduced to various breathing exercises. Someinclude no equipment or supply and examples of those can be found onlineand I think in the files section here as well. Now, the IncentiveSpirometer is a stable of most rehabs. With it you typically inhale tentimes in a sequence trying to reach certain goals or improve from theday before or at least remain constant. In my rehab we also used thePFlex. It's based on the line of trying to breathe through a straw. Ithas adjustments controlling the size of the opening. You can start withit wide and then build up. The theory is to build up your muscles usedfor breathing through a form of resistance. Some find it helpssignificantly which probably points to poor breathing habits we'vedeveloped over the years. Others don't see anything from it. A few findthey feel worse instead of better after using it. Again, its a

generallyaccepted exercise, but we all are different in our specific diseases andwith other conditions we might have.> > >> > >> > > From: Joyce T Rosenberg pinkrockybeach@ ....> > > Subject: flonase> > > To: breathe-support@ yahoogroups. com> > > Date: Thursday, March 19, 2009, 3:00 PM> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > > interesting that when i checked the posts yesterday, severalpeople> > talked about Flonase.. It was prescribed to me on Tuesday for post> nasal> > drip.> > >> > > finally contacted pulmonary doc re: increased cough and funny> feeling> > in top of chest> > > she prescribed Flonase to use for "3 solid weeks" and then callher> >

> it is already making a difference> > >> > > since i am already in the catastrophic phase of the prescription> plan,> > it was only $2.10> > >> > > of course i still owe a couple of thousand on my credit card for> other> > meds> > >> > > by the time it gets paid off, it will be time to start all over> againl> > >> > > glad to read that every one had a great time in orlando> > > saw the videos, recognized a couple of people> > >> > >> > > Pink Joyce IPF 3/06 Pennsylvania> > > Donate Life Listed 1/09> > > www.transplantfund. org> > >> >>

[Guest guest]

Thanks, Bruce. I do work daily with Spirometer. I usually hit 2500, although the chart gives 2000 for a man of my age. I am hoping to go beyond the 2500. It pretty well matches my PFT for the last 4 0r 5 years. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Friday, March 20, 2009 2:49:48 PMSubject: Re: Pflex, Fenugreek....and anything else

JackIn rehab most of us were introduced to various breathing exercises. Someinclude no equipment or supply and examples of those can be found onlineand I think in the files section here as well. Now, the IncentiveSpirometer is a stable of most rehabs. With it you typically inhale tentimes in a sequence trying to reach certain goals or improve from theday before or at least remain constant. In my rehab we also used thePFlex. It's based on the line of trying to breathe through a straw. Ithas adjustments controlling the size of the opening. You can start withit wide and then build up. The theory is to build up your muscles usedfor breathing through a form of resistance. Some find it helpssignificantly which probably points to poor breathing habits we'vedeveloped over the years. Others don't see anything from it. A few findthey feel worse instead of better after using it. Again, its a

generallyaccepted exercise, but we all are different in our specific diseases andwith other conditions we might have.> > >> > >> > > From: Joyce T Rosenberg pinkrockybeach@ ....> > > Subject: flonase> > > To: breathe-support@ yahoogroups. com> > > Date: Thursday, March 19, 2009, 3:00 PM> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > > interesting that when i checked the posts yesterday, severalpeople> > talked about Flonase.. It was prescribed to me on Tuesday for post> nasal> > drip.> > >> > > finally contacted pulmonary doc re: increased cough and funny> feeling> > in top of chest> > > she prescribed Flonase to use for "3 solid weeks" and then callher> >

> it is already making a difference> > >> > > since i am already in the catastrophic phase of the prescription> plan,> > it was only $2.10> > >> > > of course i still owe a couple of thousand on my credit card for> other> > meds> > >> > > by the time it gets paid off, it will be time to start all over> againl> > >> > > glad to read that every one had a great time in orlando> > > saw the videos, recognized a couple of people> > >> > >> > > Pink Joyce IPF 3/06 Pennsylvania> > > Donate Life Listed 1/09> > > www.transplantfund. org> > >> >>

[Guest guest]

Jack,How often to you work the Spirometer?Windsor, Ontario CanadaDx 03/08 IPFSent on the TELUS Mobility network with BlackBerryFrom: Jack Marshall Date: Fri, 20 Mar 2009 16:14:53 -0700 (PDT)To: <Breathe-Support >Subject: Re: Re: Pflex, Fenugreek....and anything else Thanks, Bruce. I do work daily with Spirometer. I usually hit 2500, although the chart gives 2000 for a man of my age. I am hoping to go beyond the 2500. It pretty well matches my PFT for the last 4 0r 5 years. Jack79/IPF - UIP/dx06/05 MaineFrom: Bruce Moreland <brucemoreland (AT) gmail (DOT) com>To: Breathe-Support Sent: Friday, March 20, 2009 2:49:48 PMSubject: Re: Pflex, Fenugreek....and anything elseJackIn rehab most of us were introduced to various breathing exercises. Someinclude no equipment or supply and examples of those can be found onlineand I think in the files section here as well. Now, the IncentiveSpirometer is a stable of most rehabs. With it you typically inhale tentimes in a sequence trying to reach certain goals or improve from theday before or at least remain constant. In my rehab we also used thePFlex. It's based on the line of trying to breathe through a straw. Ithas adjustments controlling the size of the opening. You can start withit wide and then build up. The theory is to build up your muscles usedfor breathing through a form of resistance. Some find it helpssignificantly which probably points to poor breathing habits we'vedeveloped over the years. Others don't see anything from it. A few findthey feel worse instead of better after using it. Again, its a generallyaccepted exercise, but we all are different in our specific diseases andwith other conditions we might have.> > >> > >> > > From: Joyce T Rosenberg pinkrockybeach@ ....> > > Subject: flonase> > > To: breathe-support@ yahoogroups. com> > > Date: Thursday, March 19, 2009, 3:00 PM> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > > interesting that when i checked the posts yesterday, severalpeople> > talked about Flonase.. It was prescribed to me on Tuesday for post> nasal> > drip.> > >> > > finally contacted pulmonary doc re: increased cough and funny> feeling> > in top of chest> > > she prescribed Flonase to use for "3 solid weeks" and then callher> > > it is already making a difference> > >> > > since i am already in the catastrophic phase of the prescription> plan,> > it was only $2.10> > >> > > of course i still owe a couple of thousand on my credit card for> other> > meds> > >> > > by the time it gets paid off, it will be time to start all over> againl> > >> > > glad to read that every one had a great time in orlando> > > saw the videos, recognized a couple of people> > >> > >> > > Pink Joyce IPF 3/06 Pennsylvania> > > Donate Life Listed 1/09> > > www.transplantfund. org> > >> >>

[Guest guest]

happy Friday Sher, If one was to explore the side effects of the tea they would find that it is the peanut and chickpea family so anyone who is allergic to peanuts can not drink this. Also it can make high blood pressure worse and asthma also. I know that this type of effects Bruce is trying to explain.We all are trying to cope with something and I think snapping over a comment or suggestion defeats this boards purpose.I would love to use otc inhalers BUT they would not help. Wrong meds in it. Bruce has always been helpful and not trying to take over or out knowledge anyone! He is more imformed is the way I think of him ,because he has been there and done that. Sharon p asthma ph 2008

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Pflex, Fenugreek... .and anything elseTo: Breathe-Support@ yahoogroups. comDate: Thursday, March 19, 2009, 10:43 PM

This is just to repeat a warning to everyone that what might seem thesafest choice there is for most of us might not be for others, so pleasediscuss exercise, supplements, vitamins, and anything else with yourdoctor who knows all your conditions and medications. I was taught touse a PFlex during rehab and it's appropriate for me and probably mostothers here. However, it may be too taxing for some with certain issues.As to Fenugreek, it would be contraindicated for many persons on thisforum. The amount customarily used in foods is generally not at issuebut large amounts of the supplement may be a problem with anyone withbleeding or clotting disorders or anyone with diabetes. It can becontraindicated for anyone taking insulin, warfarin, NSAID's and othermeds.When we know that something as simple as grapefruit can change the wayour bodies process medications, that reminds us how complicated it

allcan be. Now, I know we feel reluctant to discuss supplements andalternatives with many doctors, but if you can't discuss everything withyour doctor, maybe thats not the right doctor. The same goes fordiscussing breathing exercises with your pulmonologist and things suchas incentive spirometers and PFlex. It even extends to exercise. Whilewe widely promote the benefit of exercise to each of us, there is alsohuge debate and question within the medical field regarding levels ofexercise for someone with Pulmonary Hypertension. For any of us, theappropriate amount of exercise is an issue. Just because being on thetreadmill 30 minutes at 2.5 mph may be good doesn't necessarily meanthat extending that to 45 minutes and moving up to 3 mph is better. Itmay be worse. All I'm saying is discuss all aspects of your treatment ofyour meds and supplements of your exercise program with your doctors.>>> From: Joyce T Rosenberg pinkrockybeach@ ...> Subject: flonase> To: breathe-support@ yahoogroups. com> Date: Thursday, March 19, 2009, 3:00 PM>>>>>>>>>>>> interesting that when i checked the posts yesterday, several peopletalked about

Flonase. It was prescribed to me on Tuesday for post nasaldrip.>> finally contacted pulmonary doc re: increased cough and funny feelingin top of chest> she prescribed Flonase to use for "3 solid weeks" and then call her> it is already making a difference>> since i am already in the catastrophic phase of the prescription plan,it was only $2.10>> of course i still owe a couple of thousand on my credit card for othermeds>> by the time it gets paid off, it will be time to start all over againl>> glad to read that every one had a great time in orlando> saw the videos, recognized a couple of people>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life Listed 1/09> www.transplantfund.

org>

[Guest guest]

NAC n acetylcysteine -- i take it in liquid form by prescription, not sure what it does, but i think it keeps the mucus out of my lungs

recently learned that some people use it with a nebulizer

it is also sold at GNC and the vitamin shop in a solid form

need to switch to that due to formulary with prescription coverage

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: Re: Pflex, Fenugreek....and anything elseTo: Breathe-Support Date: Friday, March 20, 2009, 10:11 AM

What is NAC. Will it help with the coughing? Kathy Seweryn IPF 02/15/09

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Pflex, Fenugreek... .and anything elseTo: Breathe-Support@ yahoogroups. comDate: Friday, March 20, 2009, 9:28 AM

KathleenI'm not saying fenugreek isn't a reasonable alternative. I am sayingthat it is contraindicated in any significant quantity for many of ourboard members. I'm not referring to the occasional tea but the regulartaking of it. We have patients here who are on warfarin for blood clotsand others with diabetes. Fenugreek can be harmful to those persons. I'mby no means recommending Flonase to all persons either. I'm statingPFlex, which I generally recommend isn't right for some. I don't thinkthere is anyone here who isn't seeing at least one doctor they candiscuss any of these things with.An example of issues such as this that we've had here before is NAC.Many doctors consider it quite harmless and it is available at healthfood stores. Many persons here have felt benefit from it. However,others have had nausea and stomach problems and not realized untilpointed out that it was the

cause.There is no such thing as a universally safe medicine or supplement. Weare all different.> >> >> > From: Joyce T Rosenberg pinkrockybeach@ ...> > Subject: flonase> > To:

breathe-support@ yahoogroups. com> > Date: Thursday, March 19, 2009, 3:00 PM> >> >> >> >> >> >> >> >> >> >> >> > interesting that when i checked the posts yesterday, several people> talked about Flonase. It was prescribed to me on Tuesday for postnasal> drip.> >> > finally contacted pulmonary doc re: increased cough and funnyfeeling> in top of chest> > she prescribed Flonase to use for "3 solid weeks" and then call her> > it is already making a difference> >> > since i am already in the catastrophic phase of the prescriptionplan,> it was only $2.10> >> > of course i still owe a couple of thousand on my credit card forother> meds> >> > by the time it gets paid off, it will be

time to start all overagainl> >> > glad to read that every one had a great time in orlando> > saw the videos, recognized a couple of people> >> >> > Pink Joyce IPF 3/06 Pennsylvania> > Donate Life Listed 1/09> > www.transplantfund. org> >>

[Guest guest]

I try to work with it everyday, but somedays, particularly when I am travelling to my housing projects, I don't. Too tired when I get home. I haven't tried using it while driving; that might result in an event after which I cease breathing all together. The amount of time is hit or miss. I use it until I tire of it or I start coughing. I am convinced, though, that it is very helpful and has, in part, kept my lungs from getting worse. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Friday, March 20, 2009 7:19:26 PMSubject: Re: Re: Pflex, Fenugreek....and anything else

Jack,How often to you work the Spirometer?Windsor, Ontario CanadaDx 03/08 IPF

Sent on the TELUS Mobility network with BlackBerry

From: Jack Marshall Date: Fri, 20 Mar 2009 16:14:53 -0700 (PDT)To: <Breathe-Support@ yahoogroups. com>Subject: Re: Re: Pflex, Fenugreek... .and anything else

Thanks, Bruce. I do work daily with Spirometer. I usually hit 2500, although the chart gives 2000 for a man of my age. I am hoping to go beyond the 2500. It pretty well matches my PFT for the last 4 0r 5 years. Jack79/IPF - UIP/dx06/05 Maine

From: Bruce Moreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Friday, March 20, 2009 2:49:48 PMSubject: Re: Pflex, Fenugreek... .and anything else

JackIn rehab most of us were introduced to various breathing exercises. Someinclude no equipment or supply and examples of those can be found onlineand I think in the files section here as well. Now, the IncentiveSpirometer is a stable of most rehabs. With it you typically inhale tentimes in a sequence trying to reach certain goals or improve from theday before or at least remain constant. In my rehab we also used thePFlex. It's based on the line of trying to breathe through a straw. Ithas adjustments controlling the size of the opening. You can start withit wide and then build up. The theory is to build up your muscles usedfor breathing through a form of resistance. Some find it helpssignificantly which probably points to poor breathing habits we'vedeveloped over the years. Others don't see anything from it. A few findthey feel worse instead of better after using it. Again, its a

generallyaccepted exercise, but we all are different in our specific diseases andwith other conditions we might have.> > >> > >> > > From: Joyce T Rosenberg pinkrockybeach@ .....> > > Subject: flonase> > > To: breathe-support@ yahoogroups. com> > > Date: Thursday, March 19, 2009, 3:00 PM> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > > interesting that when i checked the posts yesterday, severalpeople> > talked about Flonase.. It was prescribed to me on Tuesday for post> nasal> > drip.> > >> > > finally contacted pulmonary doc re: increased cough and funny> feeling> > in top of chest> > > she prescribed Flonase to use for "3 solid weeks" and then callher> >

> it is already making a difference> > >> > > since i am already in the catastrophic phase of the prescription> plan,> > it was only $2.10> > >> > > of course i still owe a couple of thousand on my credit card for> other> > meds> > >> > > by the time it gets paid off, it will be time to start all over> againl> > >> > > glad to read that every one had a great time in orlando> > > saw the videos, recognized a couple of people> > >> > >> > > Pink Joyce IPF 3/06 Pennsylvania> > > Donate Life Listed 1/09> > > www.transplantfund. org> > >> >>

[Guest guest]

Hi Sharon... your post makes the point once again of us all being careful not to give others medical 'advice'...it could backfire.

Sharing our own experiences gives the information and that's all we need to do.

BTW, since you have the pflex, I'm finding it helps get the deeper breath and I feel a bit better after using it.

Now I'll wish a happy Sat. to you!

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

flonase> To: breathe-support@ yahoogroups. com> Date: Thursday, March 19, 2009, 3:00 PM>>>>>>>>>>>> interesting that when i checked the posts yesterday, several peopletalked about Flonase. It was prescribed to me on Tuesday for post nasaldrip.>> finally contacted pulmonary doc re: increased cough and funny feelingin top of chest> she prescribed Flonase to use for "3 solid weeks" and then call her> it is already making a difference>> since i am already in the catastrophic phase of the prescription plan,it was only $2.10>> of course i still owe a couple of thousand on my credit card for othermeds>> by the time it gets paid off, it will be time to start all over againl>> glad to read that every one had a great time in orlando> saw the videos, recognized a couple of people>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life Listed 1/09> www.transplantfund. org>

[Guest guest]

Hi Sharon... your post makes the point once again of us all being careful not to give others medical 'advice'...it could backfire.

Sharing our own experiences gives the information and that's all we need to do.

BTW, since you have the pflex, I'm finding it helps get the deeper breath and I feel a bit better after using it.

Now I'll wish a happy Sat. to you!

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

flonase> To: breathe-support@ yahoogroups. com> Date: Thursday, March 19, 2009, 3:00 PM>>>>>>>>>>>> interesting that when i checked the posts yesterday, several peopletalked about Flonase. It was prescribed to me on Tuesday for post nasaldrip.>> finally contacted pulmonary doc re: increased cough and funny feelingin top of chest> she prescribed Flonase to use for "3 solid weeks" and then call her> it is already making a difference>> since i am already in the catastrophic phase of the prescription plan,it was only $2.10>> of course i still owe a couple of thousand on my credit card for othermeds>> by the time it gets paid off, it will be time to start all over againl>> glad to read that every one had a great time in orlando> saw the videos, recognized a couple of people>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life Listed 1/09> www.transplantfund. org>

[Guest guest]

Right back at you, Iam glad the pflex is helping!

sharon p asthma ph 2008

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Pflex, Fenugreek... .and anything elseTo: Breathe-Support@ yahoogroups. comDate: Thursday, March 19, 2009, 10:43 PM

This is just to repeat a warning to everyone that what might seem thesafest choice there is for most of us might not be for others, so pleasediscuss exercise, supplements, vitamins, and anything else with yourdoctor who knows all your conditions and medications. I was taught touse a PFlex during rehab and it's appropriate for me and probably mostothers here. However, it may be too taxing for some with certain issues.As to Fenugreek, it would be contraindicated for many persons on thisforum. The amount customarily used in foods is generally not at issuebut large amounts of the supplement may be a problem with anyone withbleeding or clotting disorders or anyone with diabetes. It can becontraindicated for anyone taking insulin, warfarin, NSAID's and othermeds.When we know that something as simple as grapefruit can change the wayour bodies process medications, that reminds us how complicated it

allcan be. Now, I know we feel reluctant to discuss supplements andalternatives with many doctors, but if you can't discuss everything withyour doctor, maybe thats not the right doctor. The same goes fordiscussing breathing exercises with your pulmonologist and things suchas incentive spirometers and PFlex. It even extends to exercise. Whilewe widely promote the benefit of exercise to each of us, there is alsohuge debate and question within the medical field regarding levels ofexercise for someone with Pulmonary Hypertension. For any of us, theappropriate amount of exercise is an issue. Just because being on thetreadmill 30 minutes at 2.5 mph may be good doesn't necessarily meanthat extending that to 45 minutes and moving up to 3 mph is better. Itmay be worse. All I'm saying is discuss all aspects of your treatment ofyour meds and supplements of your exercise program with your doctors.>>> From: Joyce T Rosenberg pinkrockybeach@ ...> Subject: flonase> To: breathe-support@ yahoogroups. com> Date: Thursday, March 19, 2009, 3:00 PM>>>>>>>>>>>> interesting that when i checked the posts yesterday, several peopletalked about

Flonase. It was prescribed to me on Tuesday for post nasaldrip.>> finally contacted pulmonary doc re: increased cough and funny feelingin top of chest> she prescribed Flonase to use for "3 solid weeks" and then call her> it is already making a difference>> since i am already in the catastrophic phase of the prescription plan,it was only $2.10>> of course i still owe a couple of thousand on my credit card for othermeds>> by the time it gets paid off, it will be time to start all over againl>> glad to read that every one had a great time in orlando> saw the videos, recognized a couple of people>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life Listed 1/09> www.transplantfund.

org>