Re: Re: Kathi, jobs, health & email

[Guest guest]

Dear Elaine,

I too run abnormally low for my body temperture. My normal is in the

96.6 range. When the doc ask if I'm running a fever and I tell them what my

normal is they still consider me without fever at 98.8 . This is a temp for

me. Do you have any advice on how I can get them realize this.

Thanks Ellen

[Guest guest]

Dear Elaine,

I too run abnormally low for my body temperture. My normal is in the

96.6 range. When the doc ask if I'm running a fever and I tell them what my

normal is they still consider me without fever at 98.8 . This is a temp for

me. Do you have any advice on how I can get them realize this.

Thanks Ellen

[Guest guest]

Sorry Ellen,

I have had no luck at all with the docs and the temp thing. They don't consider that I have a temp at 98.6 either. I'm not usually bothered until it gets to 99 and that's when I get really uncomfy!!

I guess we are just rare cases.

Let me know if you have any luck. Take care,

Elaine

Re: Re: Kathi, jobs, health & email

Dear Elaine, I too run abnormally low for my body temperture. My normal is in the 96.6 range. When the doc ask if I'm running a fever and I tell them what my normal is they still consider me without fever at 98.8 . This is a temp for me. Do you have any advice on how I can get them realize this. Thanks EllenDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Sorry Ellen,

I have had no luck at all with the docs and the temp thing. They don't consider that I have a temp at 98.6 either. I'm not usually bothered until it gets to 99 and that's when I get really uncomfy!!

I guess we are just rare cases.

Let me know if you have any luck. Take care,

Elaine

Re: Re: Kathi, jobs, health & email

Dear Elaine, I too run abnormally low for my body temperture. My normal is in the 96.6 range. When the doc ask if I'm running a fever and I tell them what my normal is they still consider me without fever at 98.8 . This is a temp for me. Do you have any advice on how I can get them realize this. Thanks EllenDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Hi Elaine and all,

I just wanted to take a minute and try and explain what ejection fraction.

It is simply the percentage of blood pumped during each ventricular

contraction compared to the total ventricular volume. I know that is kind

of confusing but that is the easiest way I know to explain it. Maybe

someone else could break it down even better. I have read quite a few

entries this weekend from people who have low temps. My problem is just the

opposite. I run temps. that range anywhere from 99.5 to 102/103 degrees.

Before becoming symptomatic with RP my normal temp. was about 97 degrees.

Since being on the Methotrexate, I have only had one day that my temp. went

above 100.5

degrees. It usually hangs between 99.5 and 100 degrees now. I have another

question that someone might be able to answer. I am fortunate in that I

don't have to much ear involvement-- most of my problems are related to my

trachea/larynx area. I did have 2 episodes though of painful red ears early

in the year-- before being diagnosed. The problem I seem to be having with

my ears now is that they get a burning sensation around the top portion of

them-- the cartilage part. Does anyone else have this problem? They don't

turn red or swell, just get painful. This has just started in the past 2 or

3 weeks. Thanks for any input.

I hope that everyone is having a nice weekend!

Kathi

>

>Reply-To: Rpolychondritis

>To: <Rpolychondritis >

>Subject: Re: Kathi, jobs, health & email

>Date: Fri, 31 Aug 2001 10:10:23 -0700

>

>Hi Kathi,

>Yes your info has been helpful. I'm supposed to be going in for heart tests

>soon. My heart rate went up when the RP symptoms started too but haven't

>gone down. I'm not sure what a low ejection fraction is, could you explain,

>thanks. I ran slight fevers which were written off even when I explained

>that my normal body temp is about 96-97. I seem to have lots of obscure

>things about me. My body temp runs lower than normal, my blood pressure

>used

>too as well and I have one more rib than most women. There is a whole lot

>of

>other one in a million things that have happened to me, including RP, but

>we could go on for hours on those.

>

>They've been playing with my meds for a year and a half now, but I live in

>a small town and don't have access to very knowledgable doctors. I know

>more

>than my PCP about RP and probably more than the first Rheumy. I now see a

>rhuemy in Vancouver BC who has a connective tissue specialty. He said that

>I

>was only on a maintenence dose of meds and that they hadn't gone high

>enough

>to get the disease under control.

>

>I was quite sick for about four months when I first went on the metho and

>then they put me on folic acid which made me feel better but lessened the

>effect of the metho. I am now at 15mgs of pred, 20mgs of metho, 5mgs of

>folic acid, 400mgs of Celebrex, Emprcet for pain, plendil and triazide for

>BP. My blood pressure is finally going down, runs around 155/90 instead of

>160+/ 95+. So I think I'm improving.

>

>As for work, I was a Census Commissioner for four months working 40-60 hrs

>a

>week. That was definately too much for me. I will be starting two new jobs

>soon. One two week contract working on a conference for the Assembly of

>Arts

>Councils and then a part time job 25-30 hours a week for our Chamber of

>Commerce.

>

>As for the emails we usually email through the group except for private

>matters that way info is available to all. And hey, you never know what

>might help someone else. To reply to any emails, just click on the reply

>button on the top of your inbox screen and don't worry about not knowing

>we've all been there at sometime or other. It's all part of learning and

>you

>will learn a lot through this group.

>Hope you are well today.

>Take care and be well,

>Elaine

>

>----- Original Message -----

>

>To:

>Sent: Thursday, August 30, 2001 11:54 AM

>

>

> > Hi Elaine,

> > Thank you so much for your response. In the 2 days since I have joined

>this

> > group I have felt my level of frustration decreasing so much. It really

> > does help to know that there are other people who know what I am going

> > through and that can help or just be there!! I wanted to let you know

>about

> > what the conclusion was with my heart rate. As I said before, my

>resting

> > heart rate was never below 120. With any activity it was 150-160 and

>above,

> > depending on what I was doing. I was very asymptomatic though. We just

> > knew that this is what it ran AND it began running this high with the

> > beginning of my symptoms for RP which was 3.5 to 4 years ago. When I

>saw

> > Dr. Trentham he wrote a consult for me to see a cardiologist when I got

>back

> > home. I had an EKG, Echo and 24 hour holter monitor done. Everything

>came

> > back okay except that I have a slightly low ejection fraction. They

>will

> > continue to monitor me with all of these tests every 3 months. I

>noticed

> > that on my 3rd week of Methotrexate my heart rate was lower. It was

> > consistently runnning between 70 and 80. The conclusion that the Dr.'s

>came

> > to was that it must be the inflammation and the fevers that I ran every

>day

> > prior to Methotrexate that was causing the increased rate. No one is

> > certain at this point that this is what it is but that is what the

>thinking

> > is. I hope this is helpful. Are you able to work at all now? What

>kind

>of

> > work are you doing if you are working? How long did it take you being

>on

> > medication and working with doses until you found what worked for you?

> > Also, will you please let me know if I am doing this right? Am I

>suppose

>to

> > be sending things directly to you or through the other address? For all

>I

> > know, I am sending things completely wrong. I haven't quite figured

>this

> > all out! Again,Thank you so much!!

> >

> > Kathi

> >

> > _________________________________________________________________

> > Get your FREE download of MSN Explorer at

>http://explorer.msn.com/intl.asp

> >

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Hi Elaine and all,

I just wanted to take a minute and try and explain what ejection fraction.

It is simply the percentage of blood pumped during each ventricular

contraction compared to the total ventricular volume. I know that is kind

of confusing but that is the easiest way I know to explain it. Maybe

someone else could break it down even better. I have read quite a few

entries this weekend from people who have low temps. My problem is just the

opposite. I run temps. that range anywhere from 99.5 to 102/103 degrees.

Before becoming symptomatic with RP my normal temp. was about 97 degrees.

Since being on the Methotrexate, I have only had one day that my temp. went

above 100.5

degrees. It usually hangs between 99.5 and 100 degrees now. I have another

question that someone might be able to answer. I am fortunate in that I

don't have to much ear involvement-- most of my problems are related to my

trachea/larynx area. I did have 2 episodes though of painful red ears early

in the year-- before being diagnosed. The problem I seem to be having with

my ears now is that they get a burning sensation around the top portion of

them-- the cartilage part. Does anyone else have this problem? They don't

turn red or swell, just get painful. This has just started in the past 2 or

3 weeks. Thanks for any input.

I hope that everyone is having a nice weekend!

Kathi

>

>Reply-To: Rpolychondritis

>To: <Rpolychondritis >

>Subject: Re: Kathi, jobs, health & email

>Date: Fri, 31 Aug 2001 10:10:23 -0700

>

>Hi Kathi,

>Yes your info has been helpful. I'm supposed to be going in for heart tests

>soon. My heart rate went up when the RP symptoms started too but haven't

>gone down. I'm not sure what a low ejection fraction is, could you explain,

>thanks. I ran slight fevers which were written off even when I explained

>that my normal body temp is about 96-97. I seem to have lots of obscure

>things about me. My body temp runs lower than normal, my blood pressure

>used

>too as well and I have one more rib than most women. There is a whole lot

>of

>other one in a million things that have happened to me, including RP, but

>we could go on for hours on those.

>

>They've been playing with my meds for a year and a half now, but I live in

>a small town and don't have access to very knowledgable doctors. I know

>more

>than my PCP about RP and probably more than the first Rheumy. I now see a

>rhuemy in Vancouver BC who has a connective tissue specialty. He said that

>I

>was only on a maintenence dose of meds and that they hadn't gone high

>enough

>to get the disease under control.

>

>I was quite sick for about four months when I first went on the metho and

>then they put me on folic acid which made me feel better but lessened the

>effect of the metho. I am now at 15mgs of pred, 20mgs of metho, 5mgs of

>folic acid, 400mgs of Celebrex, Emprcet for pain, plendil and triazide for

>BP. My blood pressure is finally going down, runs around 155/90 instead of

>160+/ 95+. So I think I'm improving.

>

>As for work, I was a Census Commissioner for four months working 40-60 hrs

>a

>week. That was definately too much for me. I will be starting two new jobs

>soon. One two week contract working on a conference for the Assembly of

>Arts

>Councils and then a part time job 25-30 hours a week for our Chamber of

>Commerce.

>

>As for the emails we usually email through the group except for private

>matters that way info is available to all. And hey, you never know what

>might help someone else. To reply to any emails, just click on the reply

>button on the top of your inbox screen and don't worry about not knowing

>we've all been there at sometime or other. It's all part of learning and

>you

>will learn a lot through this group.

>Hope you are well today.

>Take care and be well,

>Elaine

>

>----- Original Message -----

>

>To:

>Sent: Thursday, August 30, 2001 11:54 AM

>

>

> > Hi Elaine,

> > Thank you so much for your response. In the 2 days since I have joined

>this

> > group I have felt my level of frustration decreasing so much. It really

> > does help to know that there are other people who know what I am going

> > through and that can help or just be there!! I wanted to let you know

>about

> > what the conclusion was with my heart rate. As I said before, my

>resting

> > heart rate was never below 120. With any activity it was 150-160 and

>above,

> > depending on what I was doing. I was very asymptomatic though. We just

> > knew that this is what it ran AND it began running this high with the

> > beginning of my symptoms for RP which was 3.5 to 4 years ago. When I

>saw

> > Dr. Trentham he wrote a consult for me to see a cardiologist when I got

>back

> > home. I had an EKG, Echo and 24 hour holter monitor done. Everything

>came

> > back okay except that I have a slightly low ejection fraction. They

>will

> > continue to monitor me with all of these tests every 3 months. I

>noticed

> > that on my 3rd week of Methotrexate my heart rate was lower. It was

> > consistently runnning between 70 and 80. The conclusion that the Dr.'s

>came

> > to was that it must be the inflammation and the fevers that I ran every

>day

> > prior to Methotrexate that was causing the increased rate. No one is

> > certain at this point that this is what it is but that is what the

>thinking

> > is. I hope this is helpful. Are you able to work at all now? What

>kind

>of

> > work are you doing if you are working? How long did it take you being

>on

> > medication and working with doses until you found what worked for you?

> > Also, will you please let me know if I am doing this right? Am I

>suppose

>to

> > be sending things directly to you or through the other address? For all

>I

> > know, I am sending things completely wrong. I haven't quite figured

>this

> > all out! Again,Thank you so much!!

> >

> > Kathi

> >

> > _________________________________________________________________

> > Get your FREE download of MSN Explorer at

>http://explorer.msn.com/intl.asp

> >

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Hi Kathi,

Since the Rp my body temp hangs around 98.9 and 99.5. But before the RP it was low 96.9-97.5 roughly. I haven't tried since the metho dose went up, but I did notice that my heart rate has dropped since the last dose increase. Down to 106 resting from 117-120 resting. That's 144,000 lest beats a day. That'll help I'm sure.

Thanks for the ejection fraction info, sounds simple enough to me. This would let them know how much blood is being pumped and whether the heart is working to it's full capacity, correct?

Hope you are feeling well today.

Take care,

Elaine

Re: Kathi, jobs, health & email>Date: Fri, 31 Aug 2001 10:10:23 -0700>>Hi Kathi,>Yes your info has been helpful. I'm supposed to be going in for heart tests>soon. My heart rate went up when the RP symptoms started too but haven't>gone down. I'm not sure what a low ejection fraction is, could you explain,>thanks. I ran slight fevers which were written off even when I explained>that my normal body temp is about 96-97. I seem to have lots of obscure>things about me. My body temp runs lower than normal, my blood pressure >used>too as well and I have one more rib than most women. There is a whole lot >of>other one in a million things that have happened to me, including RP, but>we could go on for hours on those.>>They've been playing with my meds for a year and a half now, but I live in>a small town and don't have access to very knowledgable doctors. I know >more>than my PCP about RP and probably more than the first Rheumy. I now see a>rhuemy in Vancouver BC who has a connective tissue specialty. He said that >I>was only on a maintenence dose of meds and that they hadn't gone high >enough>to get the disease under control.>>I was quite sick for about four months when I first went on the metho and>then they put me on folic acid which made me feel better but lessened the>effect of the metho. I am now at 15mgs of pred, 20mgs of metho, 5mgs of>folic acid, 400mgs of Celebrex, Emprcet for pain, plendil and triazide for>BP. My blood pressure is finally going down, runs around 155/90 instead of>160+/ 95+. So I think I'm improving.>>As for work, I was a Census Commissioner for four months working 40-60 hrs >a>week. That was definately too much for me. I will be starting two new jobs>soon. One two week contract working on a conference for the Assembly of >Arts>Councils and then a part time job 25-30 hours a week for our Chamber of>Commerce.>>As for the emails we usually email through the group except for private>matters that way info is available to all. And hey, you never know what>might help someone else. To reply to any emails, just click on the reply>button on the top of your inbox screen and don't worry about not knowing>we've all been there at sometime or other. It's all part of learning and >you>will learn a lot through this group.>Hope you are well today.>Take care and be well,>Elaine>>----- Original Message ----->>To: >Sent: Thursday, August 30, 2001 11:54 AM>>> > Hi Elaine,> > Thank you so much for your response. In the 2 days since I have joined>this> > group I have felt my level of frustration decreasing so much. It really> > does help to know that there are other people who know what I am going> > through and that can help or just be there!! I wanted to let you know>about> > what the conclusion was with my heart rate. As I said before, my >resting> > heart rate was never below 120. With any activity it was 150-160 and>above,> > depending on what I was doing. I was very asymptomatic though. We just> > knew that this is what it ran AND it began running this high with the> > beginning of my symptoms for RP which was 3.5 to 4 years ago. When I >saw> > Dr. Trentham he wrote a consult for me to see a cardiologist when I got>back> > home. I had an EKG, Echo and 24 hour holter monitor done. Everything>came> > back okay except that I have a slightly low ejection fraction. They >will> > continue to monitor me with all of these tests every 3 months. I >noticed> > that on my 3rd week of Methotrexate my heart rate was lower. It was> > consistently runnning between 70 and 80. The conclusion that the Dr.'s>came> > to was that it must be the inflammation and the fevers that I ran every>day> > prior to Methotrexate that was causing the increased rate. No one is> > certain at this point that this is what it is but that is what the>thinking> > is. I hope this is helpful. Are you able to work at all now? What >kind>of> > work are you doing if you are working? How long did it take you being >on> > medication and working with doses until you found what worked for you?> > Also, will you please let me know if I am doing this right? Am I >suppose>to> > be sending things directly to you or through the other address? For all >I> > know, I am sending things completely wrong. I haven't quite figured >this> > all out! Again,Thank you so much!!> >> > Kathi> >> > _________________________________________________________________> > Get your FREE download of MSN Explorer at >http://explorer.msn.com/intl.asp> >>_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.aspDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Hi Kathi,

Since the Rp my body temp hangs around 98.9 and 99.5. But before the RP it was low 96.9-97.5 roughly. I haven't tried since the metho dose went up, but I did notice that my heart rate has dropped since the last dose increase. Down to 106 resting from 117-120 resting. That's 144,000 lest beats a day. That'll help I'm sure.

Thanks for the ejection fraction info, sounds simple enough to me. This would let them know how much blood is being pumped and whether the heart is working to it's full capacity, correct?

Hope you are feeling well today.

Take care,

Elaine

Re: Kathi, jobs, health & email>Date: Fri, 31 Aug 2001 10:10:23 -0700>>Hi Kathi,>Yes your info has been helpful. I'm supposed to be going in for heart tests>soon. My heart rate went up when the RP symptoms started too but haven't>gone down. I'm not sure what a low ejection fraction is, could you explain,>thanks. I ran slight fevers which were written off even when I explained>that my normal body temp is about 96-97. I seem to have lots of obscure>things about me. My body temp runs lower than normal, my blood pressure >used>too as well and I have one more rib than most women. There is a whole lot >of>other one in a million things that have happened to me, including RP, but>we could go on for hours on those.>>They've been playing with my meds for a year and a half now, but I live in>a small town and don't have access to very knowledgable doctors. I know >more>than my PCP about RP and probably more than the first Rheumy. I now see a>rhuemy in Vancouver BC who has a connective tissue specialty. He said that >I>was only on a maintenence dose of meds and that they hadn't gone high >enough>to get the disease under control.>>I was quite sick for about four months when I first went on the metho and>then they put me on folic acid which made me feel better but lessened the>effect of the metho. I am now at 15mgs of pred, 20mgs of metho, 5mgs of>folic acid, 400mgs of Celebrex, Emprcet for pain, plendil and triazide for>BP. My blood pressure is finally going down, runs around 155/90 instead of>160+/ 95+. So I think I'm improving.>>As for work, I was a Census Commissioner for four months working 40-60 hrs >a>week. That was definately too much for me. I will be starting two new jobs>soon. One two week contract working on a conference for the Assembly of >Arts>Councils and then a part time job 25-30 hours a week for our Chamber of>Commerce.>>As for the emails we usually email through the group except for private>matters that way info is available to all. And hey, you never know what>might help someone else. To reply to any emails, just click on the reply>button on the top of your inbox screen and don't worry about not knowing>we've all been there at sometime or other. It's all part of learning and >you>will learn a lot through this group.>Hope you are well today.>Take care and be well,>Elaine>>----- Original Message ----->>To: >Sent: Thursday, August 30, 2001 11:54 AM>>> > Hi Elaine,> > Thank you so much for your response. In the 2 days since I have joined>this> > group I have felt my level of frustration decreasing so much. It really> > does help to know that there are other people who know what I am going> > through and that can help or just be there!! I wanted to let you know>about> > what the conclusion was with my heart rate. As I said before, my >resting> > heart rate was never below 120. With any activity it was 150-160 and>above,> > depending on what I was doing. I was very asymptomatic though. We just> > knew that this is what it ran AND it began running this high with the> > beginning of my symptoms for RP which was 3.5 to 4 years ago. When I >saw> > Dr. Trentham he wrote a consult for me to see a cardiologist when I got>back> > home. I had an EKG, Echo and 24 hour holter monitor done. Everything>came> > back okay except that I have a slightly low ejection fraction. They >will> > continue to monitor me with all of these tests every 3 months. I >noticed> > that on my 3rd week of Methotrexate my heart rate was lower. It was> > consistently runnning between 70 and 80. The conclusion that the Dr.'s>came> > to was that it must be the inflammation and the fevers that I ran every>day> > prior to Methotrexate that was causing the increased rate. No one is> > certain at this point that this is what it is but that is what the>thinking> > is. I hope this is helpful. Are you able to work at all now? What >kind>of> > work are you doing if you are working? How long did it take you being >on> > medication and working with doses until you found what worked for you?> > Also, will you please let me know if I am doing this right? Am I >suppose>to> > be sending things directly to you or through the other address? For all >I> > know, I am sending things completely wrong. I haven't quite figured >this> > all out! Again,Thank you so much!!> >> > Kathi> >> > _________________________________________________________________> > Get your FREE download of MSN Explorer at >http://explorer.msn.com/intl.asp> >>_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.aspDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

,

Since the metho went up my heart rate has dropped from 117-120 down to 108-109. I hope they do those heart tests soon. I'm glad it's gone down.

Elaine

Re: Kathi, jobs, health & email

> but I did notice that my heart rate has dropped since the last dose increase. Down to 106 resting from 117-120 resting. That's 144,000 lest beats a day. That'll help I'm sure. > Elaine I too have a rapid heart rate... Usually around 110-120 while resting and while taking meds for it. Mine was dx as WPW (Wolfe Parkinson, White) Who knows.?? LOL I have never had high blood pressure, but do have valve problems due to RP. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

,

Since the metho went up my heart rate has dropped from 117-120 down to 108-109. I hope they do those heart tests soon. I'm glad it's gone down.

Elaine

Re: Kathi, jobs, health & email

> but I did notice that my heart rate has dropped since the last dose increase. Down to 106 resting from 117-120 resting. That's 144,000 lest beats a day. That'll help I'm sure. > Elaine I too have a rapid heart rate... Usually around 110-120 while resting and while taking meds for it. Mine was dx as WPW (Wolfe Parkinson, White) Who knows.?? LOL I have never had high blood pressure, but do have valve problems due to RP. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

In a message dated 09/03/2001 11:01:01 AM Central Daylight Time,

angelhearts61@... writes:

<< my ears now is that they get a burning sensation around the top portion of

them-- the cartilage part. Does anyone else have this problem? >>

Kathi, I have horrible " ear flashes " kind of like a hot flash in the ear!

For the most part, it doesn't hurt, just bright red and

hot enough to burn yourself! It's the pits!! But what can you do? So long

as I'm not flaring and in pain, I'll live with my Rudolph ears! Love, Judy

[Guest guest]

In a message dated 09/03/2001 11:01:01 AM Central Daylight Time,

angelhearts61@... writes:

<< my ears now is that they get a burning sensation around the top portion of

them-- the cartilage part. Does anyone else have this problem? >>

Kathi, I have horrible " ear flashes " kind of like a hot flash in the ear!

For the most part, it doesn't hurt, just bright red and

hot enough to burn yourself! It's the pits!! But what can you do? So long

as I'm not flaring and in pain, I'll live with my Rudolph ears! Love, Judy

[Guest guest]

What a great description. This is exactly what I have. As of yet, I have

not had a real flare but boy do I have these 'hot flashes of the ears'!

Kim

Re: Re: Kathi, jobs, health & email

In a message dated 09/03/2001 11:01:01 AM Central Daylight Time,

angelhearts61@... writes:

<< my ears now is that they get a burning sensation around the top

portion of

them-- the cartilage part. Does anyone else have this problem? >>

Kathi, I have horrible " ear flashes " kind of like a hot flash in the

ear!

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR

YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT

AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

What a great description. This is exactly what I have. As of yet, I have

not had a real flare but boy do I have these 'hot flashes of the ears'!

Kim

Re: Re: Kathi, jobs, health & email

In a message dated 09/03/2001 11:01:01 AM Central Daylight Time,

angelhearts61@... writes:

<< my ears now is that they get a burning sensation around the top

portion of

them-- the cartilage part. Does anyone else have this problem? >>

Kathi, I have horrible " ear flashes " kind of like a hot flash in the

ear!

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR

YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT

AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Kathi & Judy,

I am trying to figure out if I have RP. I have "ear flashes" and my cheeks flush. This only lasts for maybe an hour or so. Nothing like what happened to my Dad's ears. My hormone levels are still hanging in there so it isn't menopause. My dermatologist says it is rosecia. My family doc says no. And I didn't say before since I am not sure what is going on with me, but I always run low. 98.6 is a temp for me. But I also worked for a doc and he always said there had to be a standard to go by and some people's norm would be below and some above. Cathy

Re: Re: Kathi, jobs, health & email

<< my ears now is that they get a burning sensation around the top portion of them-- the cartilage part. Does anyone else have this problem? >>Kathi, I have horrible "ear flashes" kind of like a hot flash in the ear! For the most part, it doesn't hurt, just bright red andhot enough to burn yourself! It's the pits!! But what can you do? So long as I'm not flaring and in pain, I'll live with my Rudolph ears! Love, JudyDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Kathi & Judy,

I am trying to figure out if I have RP. I have "ear flashes" and my cheeks flush. This only lasts for maybe an hour or so. Nothing like what happened to my Dad's ears. My hormone levels are still hanging in there so it isn't menopause. My dermatologist says it is rosecia. My family doc says no. And I didn't say before since I am not sure what is going on with me, but I always run low. 98.6 is a temp for me. But I also worked for a doc and he always said there had to be a standard to go by and some people's norm would be below and some above. Cathy

Re: Re: Kathi, jobs, health & email

<< my ears now is that they get a burning sensation around the top portion of them-- the cartilage part. Does anyone else have this problem? >>Kathi, I have horrible "ear flashes" kind of like a hot flash in the ear! For the most part, it doesn't hurt, just bright red andhot enough to burn yourself! It's the pits!! But what can you do? So long as I'm not flaring and in pain, I'll live with my Rudolph ears! Love, JudyDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Hi Cathy,

I don't know how much help I can be, but I do want to tell you about my

experience with " ROSACEA " . I have had a persistent red face for 20 years.

Because my Husband is Military, we make frequent moves and every time we

would move and I would have to go to a new Dr.-- usually just for pap smears

and physicals for jobs, the Dr. would get all upset about my face and send

me to specialists and Dermatologists to check it out, even though I was

totally asymptomatic of everything. In 20 years, there was 1 Dermatologists

who said it was cea (all other Dr.s through the years disagreed). He

treated me for cea with Metrogel and Tetracycline. NOTHING EVER CHANGED

MY RED FACE. Most of the Dr.'s I saw through the years felt very strongly

that I would eventually be diagnosed with Lupus because it is the classic

looking Lupus " Butterfly rash " . When I became symptomatic with RP the Dr.'s

were convinced that I had Lupus. The only problem was that I didn't test

positive for Lupus. So, I still have a red face, I don't have cea, I

don't have Lupus but I do have RP. Has anyone ever tested you for Lupus--

specifically an ANA test? I know this doesn't help, but it was intriguing

to see someone with a Red face like mine. That is one of the few things

that I haven't seen discussed. I wonder if anyone else with RP has the Red

Face?????

Kathi

>

>Reply-To: Rpolychondritis

>To: <Rpolychondritis >

>Subject: Re: Re: Kathi, jobs, health & email

>Date: Fri, 7 Sep 2001 07:26:36 -0400

>

>Kathi & Judy,

> I am trying to figure out if I have RP. I have " ear flashes " and my

>cheeks flush. This only lasts for maybe an hour or so. Nothing like what

>happened to my Dad's ears. My hormone levels are still hanging in there so

>it isn't menopause. My dermatologist says it is rosecia. My family doc

>says no. And I didn't say before since I am not sure what is going on with

>me, but I always run low. 98.6 is a temp for me. But I also worked for a

>doc and he always said there had to be a standard to go by and some

>people's norm would be below and some above. Cathy

> Re: Re: Kathi, jobs, health & email

>

>

> In a message dated 09/03/2001 11:01:01 AM Central Daylight Time,

> angelhearts61@... writes:

>

> << my ears now is that they get a burning sensation around the top

>portion of

> them-- the cartilage part. Does anyone else have this problem? >>

>

> Kathi, I have horrible " ear flashes " kind of like a hot flash in the

>ear!

> For the most part, it doesn't hurt, just bright red and

> hot enough to burn yourself! It's the pits!! But what can you do? So

>long

> as I'm not flaring and in pain, I'll live with my Rudolph ears! Love,

>Judy

>

>

[Guest guest]

Hi Cathy,

I don't know how much help I can be, but I do want to tell you about my

experience with " ROSACEA " . I have had a persistent red face for 20 years.

Because my Husband is Military, we make frequent moves and every time we

would move and I would have to go to a new Dr.-- usually just for pap smears

and physicals for jobs, the Dr. would get all upset about my face and send

me to specialists and Dermatologists to check it out, even though I was

totally asymptomatic of everything. In 20 years, there was 1 Dermatologists

who said it was cea (all other Dr.s through the years disagreed). He

treated me for cea with Metrogel and Tetracycline. NOTHING EVER CHANGED

MY RED FACE. Most of the Dr.'s I saw through the years felt very strongly

that I would eventually be diagnosed with Lupus because it is the classic

looking Lupus " Butterfly rash " . When I became symptomatic with RP the Dr.'s

were convinced that I had Lupus. The only problem was that I didn't test

positive for Lupus. So, I still have a red face, I don't have cea, I

don't have Lupus but I do have RP. Has anyone ever tested you for Lupus--

specifically an ANA test? I know this doesn't help, but it was intriguing

to see someone with a Red face like mine. That is one of the few things

that I haven't seen discussed. I wonder if anyone else with RP has the Red

Face?????

Kathi

>

>Reply-To: Rpolychondritis

>To: <Rpolychondritis >

>Subject: Re: Re: Kathi, jobs, health & email

>Date: Fri, 7 Sep 2001 07:26:36 -0400

>

>Kathi & Judy,

> I am trying to figure out if I have RP. I have " ear flashes " and my

>cheeks flush. This only lasts for maybe an hour or so. Nothing like what

>happened to my Dad's ears. My hormone levels are still hanging in there so

>it isn't menopause. My dermatologist says it is rosecia. My family doc

>says no. And I didn't say before since I am not sure what is going on with

>me, but I always run low. 98.6 is a temp for me. But I also worked for a

>doc and he always said there had to be a standard to go by and some

>people's norm would be below and some above. Cathy

> Re: Re: Kathi, jobs, health & email

>

>

> In a message dated 09/03/2001 11:01:01 AM Central Daylight Time,

> angelhearts61@... writes:

>

> << my ears now is that they get a burning sensation around the top

>portion of

> them-- the cartilage part. Does anyone else have this problem? >>

>

> Kathi, I have horrible " ear flashes " kind of like a hot flash in the

>ear!

> For the most part, it doesn't hurt, just bright red and

> hot enough to burn yourself! It's the pits!! But what can you do? So

>long

> as I'm not flaring and in pain, I'll live with my Rudolph ears! Love,

>Judy

>

>

[Guest guest]

In a message dated 09/06/2001 11:05:28 PM Central Daylight Time,

ramius@... writes:

<< but boy do I have these 'hot flashes of the ears'! >>

Kim, don't they drive you nuts? And guaranteed to do it at the most

inconvenient times and places! My mom gave me a rattam fan which helps a

little faster than waiting for them to pass. My hunny says I'm flashing

signals to the priest! Such fun! Love, Judy

[Guest guest]

In a message dated 09/06/2001 11:05:28 PM Central Daylight Time,

ramius@... writes:

<< but boy do I have these 'hot flashes of the ears'! >>

Kim, don't they drive you nuts? And guaranteed to do it at the most

inconvenient times and places! My mom gave me a rattam fan which helps a

little faster than waiting for them to pass. My hunny says I'm flashing

signals to the priest! Such fun! Love, Judy

[Guest guest]

Judy,

It does happen at the most inconvenient times. After I told the folks I

work with what the drs think I have they began 'watching' my ears. I

was and am not offended by that especially when they want to help but...

I am vain enough to not want everyone to look at my ears when they are

soooooo red. For this reason I am trying to have enough patience to let

my hair grow you. I usually wear it fairly short. = )

Kim

Re: Re: Kathi, jobs, health & email

In a message dated 09/06/2001 11:05:28 PM Central Daylight Time,

ramius@... writes:

<< but boy do I have these 'hot flashes of the ears'! >>

Kim, don't they drive you nuts? And guaranteed to do it at the most

inconvenient times and places! Love, Judy

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR

YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT

AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Judy,

It does happen at the most inconvenient times. After I told the folks I

work with what the drs think I have they began 'watching' my ears. I

was and am not offended by that especially when they want to help but...

I am vain enough to not want everyone to look at my ears when they are

soooooo red. For this reason I am trying to have enough patience to let

my hair grow you. I usually wear it fairly short. = )

Kim

Re: Re: Kathi, jobs, health & email

In a message dated 09/06/2001 11:05:28 PM Central Daylight Time,

ramius@... writes:

<< but boy do I have these 'hot flashes of the ears'! >>

Kim, don't they drive you nuts? And guaranteed to do it at the most

inconvenient times and places! Love, Judy

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR

YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT

AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Kathi,

It does help because it tells me someone else had the same thing that the doc can't pin down. We have been laughing for years about my "flashes" but they don't seem so funny anymore. They are uncomfortable, but nothing like the ear flares I have read about. My dermatologist also said a it was a marker for lupus...but my blood work says no. Cathy

Re: Re: Kathi, jobs, health & email>>> >> << my ears now is that they get a burning sensation around the top >portion of> them-- the cartilage part. Does anyone else have this problem? >>>> Kathi, I have horrible "ear flashes" kind of like a hot flash in the >ear!> For the most part, it doesn't hurt, just bright red and> hot enough to burn yourself! It's the pits!! But what can you do? So >long> as I'm not flaring and in pain, I'll live with my Rudolph ears! Love, >Judy>>

[Guest guest]

Kathi,

It does help because it tells me someone else had the same thing that the doc can't pin down. We have been laughing for years about my "flashes" but they don't seem so funny anymore. They are uncomfortable, but nothing like the ear flares I have read about. My dermatologist also said a it was a marker for lupus...but my blood work says no. Cathy

Re: Re: Kathi, jobs, health & email>>> >> << my ears now is that they get a burning sensation around the top >portion of> them-- the cartilage part. Does anyone else have this problem? >>>> Kathi, I have horrible "ear flashes" kind of like a hot flash in the >ear!> For the most part, it doesn't hurt, just bright red and> hot enough to burn yourself! It's the pits!! But what can you do? So >long> as I'm not flaring and in pain, I'll live with my Rudolph ears! Love, >Judy>>

[Guest guest]

In a message dated 9/7/01 11:43:34 AM Pacific Daylight Time,

angelhearts61@... writes:

<< know this doesn't help, but it was intriguing

to see someone with a Red face like mine. That is one of the few things

that I haven't seen discussed. I wonder if anyone else with RP has the Red

Face????? >>

Kathi, I have a red face and neck... Plus the palms of my hands are red

also... Test borderline for Lupus, but have for years...

hugs