Re: New Member story and questions

[Guest guest]

Hi , the seminarian! Just to let you know you are in my prayers. I teach theology at the Seminary in Miami. I am sorry you've been through so much, it takes a long time before they can diagnose this disease. It took me eight years, and I am sure there are many like me. I've been through a host of medications, for I also have an aggressive form. Finally, Prednisone, Arava and Colchicine seem to do it for me. I take them daily. I've had some problems with my heart, including PAT (paroxysmal atrial tachychardia) but never as severe as yours. Most of the trouble has been pericharditis. Do know you are in my prayers, take heart.

[Guest guest]

In a message dated 3/26/02 9:11:41 AM Pacific Standard Time,

jebright@... writes:

<< I wanted to know if anyone else

has had electrical problems with their heart develop as a result of

this illness. My doctor and cardiologist don't know of any links,

but it does seem related since the RP became troublesome immediately

following the heart problem. >>

, welcome to the greatest group in the world. Please feel free to ask

all the questions you want. We learn something new everyday.

I will skip all the stuff you probably already know for now and just get to

your question.

For years I had heart palpatations that would cause my heart to beat almost

300 beats per minute. Would go to the ER they would give me IV meds and send

me home. I never knew when this would happen. In 1995 they diagnosed me

with WPW (wolf, parkinson, white) which is when the electrical part of the

heart goes haywire. I also have Mitral Valve Prolapse and Aortic

Insuffientcy from the RP. Medications seem to keep this under control for me

now.

Again, welcome and please ask whatever questions you may have.

[Guest guest]

Wow, , isn't this a FUN disease? My only question is how did you manage to lose weight? Just wait til you start the prednisone, my guess is the weight will come back fast enough. That is my biggest complaint with the prednisone. As everyone in the group knows, I tend to eat the woodwork when I'm on pred - which seems to be most of the time! Everytime I get down to 5 or 10 mgs, something else seems to happen and I'm right back up to 60 mgs again! Fortunately, the Methotrexate is still working for me, still have side effects (nausea and my Tuesday migraine) plus fatigue, which everyone has, but I'm not flaring so I am willing to put up with the side effects. I hope your rheumy finds out what works best for you and that you can tolerate the treatment as everyone is diferent which is why none of our stories is the same, makes it tough on our doctors too! Hang in there, once they get you regulated, it is better. While my flares are under control, my life is fairly normal, so don't get too down, altho' I know how easy it is to do so. Hang in there, you WILL feel better! Judy O New Member story and questions Dear Group;I just wanted to introduce myself. My name is and I'moriginally from North Carolina, but currently I'm a seminarian inWashington, DC. I've been here in DC for almost three years now.First, thank you for creating this group. I'm sure it will provebeneficial to me as I try to sort through over 48,000 messages!Second, last week, on my 27th birthday no less, I was diagnosed withRelapsing Polychondritis. I had never heard of it before. I'm suremost all of your stories are the same, so I'll keep mine brief. Igrew up a healthy kid and played some sports in high school. Theyear I went off to college I had some health problems. I just didn'tfeel so good. Student health determined that I was diabetic. Well, Ihad put on several pounds my freshman year, and after dieting I wasable to regulate my diabetes via diet and exercise. By the time Igraduated, I had to be put on several medications to help regulateboth the diabetes and the effects of the disease. In January of2001, a year and a half after entering seminary, I had an incidentof A-Fibrillation. It lasted 37 hours and I was in the CICU forthree days. The electrical systems of my heart began to fail eventhough my heart muscle was just fine. After regulating this eventthere were a few others that required hospitalization. But,eventually it was regulated. However, I never felt better. I startedhaving cases of colds that wouldn't go away, bronchitis that seemedto come and go not paying attention to any cough medicine I wastaking. Last year I also started losing weight. I dropped almost 50pounds. Sometime in August of last year a lumps developedsimultaneously on my right ear, in my throat, and believe it or not,in my right eyelid. I went to student health, bad mistake; theytreated me for months like I was crazy. Finally, I went to an ENT.He did a surgical biopsy and found that these lumps were cartilagein a state of degeneration. The scary part was the rate of growth.They started out as an annoyance, but began to cause some pain byOctober of last year. Finally, my ENT recommended a rheumatologist.I saw him in January. He took tons of blood work tests. He also sentme for a pulmonary test and reviewed my history. By February therewere some problems with the veins in my legs and with numbness in myhands and feet. By now I've lost nearly 60 pounds and I felt tiredall the time. My lab work showed that there was swelling somewherein my body. I believe he said my C Reactive Protein something wasalmost 50 and the Westergren ESR test was 50. There were other teststhat pointed towards swelling as well and the pulmonary testsconcluded that there were airway restrictions. So, as you can guess,on March 11th the doc told me that I had something that wasn't toocommon called Relapsing Polychondritis. He said it wasn't a goodthing to have. He is sending me for an MRI of my throat to determinethe extent of the damage there since it is now difficult to swallowwithout overcoming the lump and hearing a loud clicking sound. Hemay start me on steroids and cortisone shots, but because I amdiabetic he is not sure how I will react.So in addition to sharing my story, I wanted to know if anyone elsehas had electrical problems with their heart develop as a result ofthis illness. My doctor and cardiologist don't know of any links,but it does seem related since the RP became troublesome immediatelyfollowing the heart problem.Thanks again for this group and your support. You are all rememberedin my daily prayers.Sincerely,

[Guest guest]

Hi ,

Welcome to the RP group.

Sorry to hear you have RP but you will find wonderful support here.

I have not had heart problems but do have Diabetes. It is harder to keep under control when you are on Prednisone. The higher my Pred dose, the higher my blood sugar goes.

However, when I consider the alternatives I realize I could not survive without the Pred. Are you on any meds for the Diabetes? I take Glucovance 2 times a day and am having good results with it.

Sandy

Dear Group;I just wanted to introduce myself. My name is and I'm originally from North Carolina, but currently I'm a seminarian in Washington, DC. I've been here in DC for almost three years now. First, thank you for creating this group. I'm sure it will prove beneficial to me as I try to sort through over 48,000 messages!Second, last week, on my 27th birthday no less, I was diagnosed with Relapsing Polychondritis. I had never heard of it before. I'm sure most all of your stories are the same, so I'll keep mine brief. I grew up a healthy kid and played some sports in high school. The year I went off to college I had some health problems. I just didn't feel so good. Student health determined that I was diabetic. Well, I had put on several pounds my freshman year, and after dieting I was able to regulate my diabetes via diet and exercise. By the time I graduated, I had to be put on several medications to help regulate both the diabetes and the effects of the disease. In January of 2001, a year and a half after entering seminary, I had an incident of A-Fibrillation. It lasted 37 hours and I was in the CICU for three days. The electrical systems of my heart began to fail even though my heart muscle was just fine. After regulating this event there were a few others that required hospitalization. But, eventually it was regulated. However, I never felt better. I started having cases of colds that wouldn't go away, bronchitis that seemed to come and go not paying attention to any cough medicine I was taking. Last year I also started losing weight. I dropped almost 50 pounds. Sometime in August of last year a lumps developed simultaneously on my right ear, in my throat, and believe it or not, in my right eyelid. I went to student health, bad mistake; they treated me for months like I was crazy. Finally, I went to an ENT. He did a surgical biopsy and found that these lumps were cartilage in a state of degeneration. The scary part was the rate of growth. They started out as an annoyance, but began to cause some pain by October of last year. Finally, my ENT recommended a rheumatologist. I saw him in January. He took tons of blood work tests. He also sent me for a pulmonary test and reviewed my history. By February there were some problems with the veins in my legs and with numbness in my hands and feet. By now I've lost nearly 60 pounds and I felt tired all the time. My lab work showed that there was swelling somewhere in my body. I believe he said my C Reactive Protein something was almost 50 and the Westergren ESR test was 50. There were other tests that pointed towards swelling as well and the pulmonary tests concluded that there were airway restrictions. So, as you can guess, on March 11th the doc told me that I had something that wasn't too common called Relapsing Polychondritis. He said it wasn't a good thing to have. He is sending me for an MRI of my throat to determine the extent of the damage there since it is now difficult to swallow without overcoming the lump and hearing a loud clicking sound. He may start me on steroids and cortisone shots, but because I am diabetic he is not sure how I will react. So in addition to sharing my story, I wanted to know if anyone else has had electrical problems with their heart develop as a result of this illness. My doctor and cardiologist don't know of any links, but it does seem related since the RP became troublesome immediately following the heart problem.Thanks again for this group and your support. You are all remembered in my daily prayers.Sincerely,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,

Yah I want to know how he was able to do it. I just look at food and gain weight! LOL I am trying a new diet now and hope it works. Will let you know! )

So good to see you posting again!

Lots of love

Glenda

Wow, , isn't this a FUN disease? My only question is how did you manage to lose weight? Just wait til you start the prednisone, my guess is the weight will come back fast enough. Hang in there, you WILL feel better! Judy O

[Guest guest]

Glenda, are you eating woodwork? It's very tasty with beef gravy and mashed potatoes! Love, Judy Re: New Member story and questions Judy, Yah I want to know how he was able to do it. I just look at food and gain weight! LOL I am trying a new diet now and hope it works. Will let you know! ) So good to see you posting again! Lots of love Glenda Wow, , isn't this a FUN disease? My only question is how did you manage to lose weight? Just wait til you start the prednisone, my guess is the weight will come back fast enough. Hang in there, you WILL feel better! Judy ODISCLAIMER!!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]

, I have the PVC's also. Just about drive you crazy huh? I'm on

Toprol XL and Cardizem CD and Zestril. I have no idea if there is a link

with that. I know my valve damage is linked to RP.

In answer you your question on one of your other posts, I felt better once I

was put on the pred. Boy you want to talk about energy level...... On the

high doses I could stay up for days and clean mine and everyone elses house.

LOl

as the pred dose came down, I was feeling back to normal. Tired. LOl I also

have fibromyalgia and a sleep disorder. I only sleep for a few hours a

night. Then all of a sudden I'm really tired and catch up for 2 days worth

of sleep. Still tired, just can't sleep. I'm on sleeping medication and it

has helped me to get about 4-5 hours of sleep a night.

Once you are on the right meds, and they are different for all of us, you

should see improvement. I am currently on Plaquenil and Pred and trying to

lower the pred. I just had to go back up to 10mg last week because my ribs

were flaring. I hope to start decreasing again. Once you have been on it

long term, when you get down to 10mg you should only lower by 1mg a month.

So it's a slow process. I have been on it for 3 years. Looking forward to

getting off and hopefully loseing the weight I've gained.

Please keep us updated as to why you find out and keep asking questions. We

have so many knowledgable members.. Someone will have an answer for you or

tell you where to look.

Hope you have a wonderful Easter and will be keeping you in my thoughts and

prayer.

[Guest guest]

Dear ;

I presume that it's Sr. . The only seminary in Miami I

know of is St. Vianney College Seminary. Is this where you

teach? In any case, thank you for such a kind reply. I only have

access to a computer infrequently, so I apologize for my remiss.

Thank you for your prayers, know that you are in mine, too. I

haven't been placed on any medication yet. I go back on 4/18 to find

out what happens next. In the meantime, I went to another Pulmonary

test. It said that I was at 48% of the average for most lung capcity

tests. I'm don't know what that means exactly, but I don't think

it's good. I hope they do put me on something soon. I'm starting to

ache a lot. Is that common with this disease? My hands seem like

their " asleep, " tingly-like. My nose has also started to be painful

like a band is across the top.

Anyway, thanks again for your kind words. Keep up the good work!

Have a blessed Eastertide,

~, the seminarian

> Hi , the seminarian! Just to let you know you are in my

prayers. I

> teach theology at the Seminary in Miami. I am sorry you've been

through so

> much, it takes a long time before they can diagnose this disease.

It took me

> eight years, and I am sure there are many like me. I've been

through a host

> of medications, for I also have an aggressive form. Finally,

Prednisone,

> Arava and Colchicine seem to do it for me. I take them daily.

I've had some

> problems with my heart, including PAT (paroxysmal atrial

tachychardia) but

> never as severe as yours. Most of the trouble has been

pericharditis. Do

> know you are in my prayers, take heart.

[Guest guest]

Dear ;

Thanks so much for your message and kind words. I'm sorry to hear

that you have heart problems as well. I was incorrectly diagnosed

years ago with Wolf-Parkinson-White syndrome. There was something

causing PVCs to occur after every three or four beats. It became

rather annoying. Then in January of last year I started having

incidents of my heart fluttering and getting light-headed. I would

go to town. I'd stay for a couple days while they would pump

me full of meds. One incident I maintained a heart-rate of nearly

200 for over 36 hours. Now, if I were exercising that might be good!

However, these events would happen regularly. Currently, for my

heart problems I'm on Toprol XL, Prinivil, and Paceron. If the

recently added Paceron doesn't keep the beats normal, I will have to

have catheter ablation soon. Is there solid evidence that this is

linked with RP? As the symptoms of one increase, so does the others.

Is it spurious or is there a real link?

Thanks again for your warm welcome and kind words.

~

> In a message dated 3/26/02 9:11:41 AM Pacific Standard Time,

> jebright@t... writes:

>

> << I wanted to know if anyone else

> has had electrical problems with their heart develop as a result

of

> this illness. My doctor and cardiologist don't know of any links,

> but it does seem related since the RP became troublesome

immediately

> following the heart problem. >>

>

> , welcome to the greatest group in the world. Please feel

free to ask

> all the questions you want. We learn something new everyday.

>

> I will skip all the stuff you probably already know for now and

just get to

> your question.

>

> For years I had heart palpatations that would cause my heart to

beat almost

> 300 beats per minute. Would go to the ER they would give me IV

meds and send

> me home. I never knew when this would happen. In 1995 they

diagnosed me

> with WPW (wolf, parkinson, white) which is when the electrical

part of the

> heart goes haywire. I also have Mitral Valve Prolapse and Aortic

> Insuffientcy from the RP. Medications seem to keep this under

control for me

> now.

>

> Again, welcome and please ask whatever questions you may have.

>

>

[Guest guest]

Dear Judith;

Well, I haven't been placed on Prednisone or Cortizone yet. I

suppose it has something to do with RP. I know that as soon as I am

placed on a steroid I will gain a lot back. I was just starting to

enjoy being thin again. For the last nearly 5 to 7 years I have felt

progressively worse almost to the point of fatigue somedays. My

doctor explained that it was probably due to RP. My question to you:

When you are placed on these meds, does your energy level return?

Are you able to sleep through the night again? Do you feel human

again? It's not very fun to be sitting at dinner, have your throat,

ear, and nose start to ache followed by slightly blurred vision and

halos around every light as your eyes begin to swell. I'd be happy

with just having some of the symptoms go away. The worst thing for

me is the loss of energy. I'm only 30 and I find myself telling my

friends, " I don't think I can make it to dinner tonight because I

don't have any energy left. " I'm talking like I'm 188 years old! I

find myself sitting in my morning class and daydreaming about

getting back to my room after lunch for a nap. Then I calculate in

my mind exactly how much time I'll be able to sleep, before I have

to get up for the next class. Is this fatigue common? Does it go

away after treatment?

Again, thanks for the kind words. I hope I don't ask too many

questions!

Thanks,

~

> Wow, , isn't this a FUN disease? My only question is how did

you manage to lose weight? Just wait til you start the prednisone,

my guess is the weight will come back fast enough. That is my

biggest complaint with the prednisone. As everyone in the group

knows, I tend to eat the woodwork when I'm on pred - which seems to

be most of the time! Everytime I get down to 5 or 10 mgs, something

else seems to happen and I'm right back up to 60 mgs again!

Fortunately, the Methotrexate is still working for me, still have

side effects (nausea and my Tuesday migraine) plus fatigue, which

everyone has, but I'm not flaring so I am willing to put up with the

side effects. I hope your rheumy finds out what works best for you

and that you can tolerate the treatment as everyone is diferent

which is why none of our stories is the same, makes it tough on our

doctors too! Hang in there, once they get you regulated, it is

better. While my flares are under control, my life is fairly

normal, so don't get too down, altho' I know how easy it is to do

so. Hang in there, you WILL feel better! Judy O

>

> New Member story and questions

>

> Dear Group;

> I just wanted to introduce myself. My name is and I'm

> originally from North Carolina, but currently I'm a seminarian in

> Washington, DC. I've been here in DC for almost three years now.

>

> First, thank you for creating this group. I'm sure it will prove

> beneficial to me as I try to sort through over 48,000 messages!

>

> Second, last week, on my 27th birthday no less, I was diagnosed

with

> Relapsing Polychondritis. I had never heard of it before. I'm sure

> most all of your stories are the same, so I'll keep mine brief. I

> grew up a healthy kid and played some sports in high school. The

> year I went off to college I had some health problems. I just

didn't

> feel so good. Student health determined that I was diabetic. Well,

I

> had put on several pounds my freshman year, and after dieting I was

> able to regulate my diabetes via diet and exercise. By the time I

> graduated, I had to be put on several medications to help regulate

> both the diabetes and the effects of the disease. In January of

> 2001, a year and a half after entering seminary, I had an incident

> of A-Fibrillation. It lasted 37 hours and I was in the CICU for

> three days. The electrical systems of my heart began to fail even

> though my heart muscle was just fine. After regulating this event

> there were a few others that required hospitalization. But,

> eventually it was regulated. However, I never felt better. I

started

> having cases of colds that wouldn't go away, bronchitis that seemed

> to come and go not paying attention to any cough medicine I was

> taking. Last year I also started losing weight. I dropped almost 50

> pounds. Sometime in August of last year a lumps developed

> simultaneously on my right ear, in my throat, and believe it or

not,

> in my right eyelid. I went to student health, bad mistake; they

> treated me for months like I was crazy. Finally, I went to an ENT.

> He did a surgical biopsy and found that these lumps were cartilage

> in a state of degeneration. The scary part was the rate of growth.

> They started out as an annoyance, but began to cause some pain by

> October of last year. Finally, my ENT recommended a rheumatologist.

> I saw him in January. He took tons of blood work tests. He also

sent

> me for a pulmonary test and reviewed my history. By February there

> were some problems with the veins in my legs and with numbness in

my

> hands and feet. By now I've lost nearly 60 pounds and I felt tired

> all the time. My lab work showed that there was swelling somewhere

> in my body. I believe he said my C Reactive Protein something was

> almost 50 and the Westergren ESR test was 50. There were other

tests

> that pointed towards swelling as well and the pulmonary tests

> concluded that there were airway restrictions. So, as you can

guess,

> on March 11th the doc told me that I had something that wasn't too

> common called Relapsing Polychondritis. He said it wasn't a good

> thing to have. He is sending me for an MRI of my throat to

determine

> the extent of the damage there since it is now difficult to swallow

> without overcoming the lump and hearing a loud clicking sound. He

> may start me on steroids and cortisone shots, but because I am

> diabetic he is not sure how I will react.

>

> So in addition to sharing my story, I wanted to know if anyone else

> has had electrical problems with their heart develop as a result of

> this illness. My doctor and cardiologist don't know of any links,

> but it does seem related since the RP became troublesome

immediately

> following the heart problem.

>

> Thanks again for this group and your support. You are all

remembered

> in my daily prayers.

>

> Sincerely,

>

>

>

>

>

> 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]

Dear Sandy;

Thanks for such a warm response. I was on Glucotrol XL, Actos, and

Glucophage for several years, but after I lost so much weight it

wasn't necessary for me to take them anymore. I was eating properly

again and getting exercise as best I could. In the last several

months, I've been very fatigued and haven't had the energy to go to

the gym. I feel good after I exercise, but I have to have nearly an

entire morning to recover from it though.

Again thanks for the kind welcome.

~

> Hi ,

> Welcome to the RP group.

> Sorry to hear you have RP but you will find wonderful support

here.

> I have not had heart problems but do have Diabetes. It is harder

to keep under control when you are on Prednisone. The higher my Pred

dose, the higher my blood sugar goes.

> However, when I consider the alternatives I realize I could not

survive without the Pred. Are you on any meds for the Diabetes? I

take Glucovance 2 times a day and am having good results with it.

>

> Sandy

>

>

>

> Dear Group;

> I just wanted to introduce myself. My name is and I'm

> originally from North Carolina, but currently I'm a seminarian

in

> Washington, DC. I've been here in DC for almost three years now.

>

> First, thank you for creating this group. I'm sure it will prove

> beneficial to me as I try to sort through over 48,000 messages!

>

> Second, last week, on my 27th birthday no less, I was diagnosed

with

> Relapsing Polychondritis. I had never heard of it before. I'm

sure

> most all of your stories are the same, so I'll keep mine brief.

I

> grew up a healthy kid and played some sports in high school. The

> year I went off to college I had some health problems. I just

didn't

> feel so good. Student health determined that I was diabetic.

Well, I

> had put on several pounds my freshman year, and after dieting I

was

> able to regulate my diabetes via diet and exercise. By the time

I

> graduated, I had to be put on several medications to help

regulate

> both the diabetes and the effects of the disease. In January of

> 2001, a year and a half after entering seminary, I had an

incident

> of A-Fibrillation. It lasted 37 hours and I was in the CICU for

> three days. The electrical systems of my heart began to fail

even

> though my heart muscle was just fine. After regulating this

event

> there were a few others that required hospitalization. But,

> eventually it was regulated. However, I never felt better. I

started

> having cases of colds that wouldn't go away, bronchitis that

seemed

> to come and go not paying attention to any cough medicine I was

> taking. Last year I also started losing weight. I dropped almost

50

> pounds. Sometime in August of last year a lumps developed

> simultaneously on my right ear, in my throat, and believe it or

not,

> in my right eyelid. I went to student health, bad mistake; they

> treated me for months like I was crazy. Finally, I went to an

ENT.

> He did a surgical biopsy and found that these lumps were

cartilage

> in a state of degeneration. The scary part was the rate of

growth.

> They started out as an annoyance, but began to cause some pain

by

> October of last year. Finally, my ENT recommended a

rheumatologist.

> I saw him in January. He took tons of blood work tests. He also

sent

> me for a pulmonary test and reviewed my history. By February

there

> were some problems with the veins in my legs and with numbness

in my

> hands and feet. By now I've lost nearly 60 pounds and I felt

tired

> all the time. My lab work showed that there was swelling

somewhere

> in my body. I believe he said my C Reactive Protein something

was

> almost 50 and the Westergren ESR test was 50. There were other

tests

> that pointed towards swelling as well and the pulmonary tests

> concluded that there were airway restrictions. So, as you can

guess,

> on March 11th the doc told me that I had something that wasn't

too

> common called Relapsing Polychondritis. He said it wasn't a good

> thing to have. He is sending me for an MRI of my throat to

determine

> the extent of the damage there since it is now difficult to

swallow

> without overcoming the lump and hearing a loud clicking sound.

He

> may start me on steroids and cortisone shots, but because I am

> diabetic he is not sure how I will react.

>

> So in addition to sharing my story, I wanted to know if anyone

else

> has had electrical problems with their heart develop as a result

of

> this illness. My doctor and cardiologist don't know of any

links,

> but it does seem related since the RP became troublesome

immediately

> following the heart problem.

>

> Thanks again for this group and your support. You are all

remembered

> in my daily prayers.

>

> Sincerely,

>

>

>

>

>

[Guest guest]

Dear Glenda;

I wish I could say it was something I was doing that caused me to

lose the weight. However, I haven't started on any steroids or other

treatments for RP yet. I go back on 4/18 to find out the course of

action for this disease. Right now I'm finishing up a set of

Pulmonary Function Tests over the last two days. I think my doc is

waiting for those results before he proceeds. I'm sure I'll gain a

lot of the weight back after I'm put on something.

Thank you for the response. This seems like a great group.

Thanks, ~

> Judy,

> Yah I want to know how he was able to do it. I just look at food

and gain weight! LOL I am trying a new diet now and hope it works.

Will let you know! )

> So good to see you posting again!

> Lots of love

> Glenda

>

>

> Wow, , isn't this a FUN disease? My only question is how

did you manage to lose weight? Just wait til you start the

prednisone, my guess is the weight will come back fast enough.

Hang in there, you WILL feel better! Judy O

[Guest guest]

Hi ,

Lucy, here in Goldsboro, North Carolina. You live in DC?

I have been in NC for about 28 years. I was diagnosed in Jan. 2000 with RP.

There are several more things that I have also been diagnosed with but RP is

the scary one.

Let me know where you live Please. I saw something about North Carolina in

a post and I could not figure out if you live in NC or if you were just

close by.

Have a Blessed Day and know that you are in everyone's prayers all of the

time. Love and Prayers, Lucy

Re: New Member story and questions

> Dear Sandy;

> Thanks for such a warm response. I was on Glucotrol XL, Actos, and

> Glucophage for several years, but after I lost so much weight it

> wasn't necessary for me to take them anymore. I was eating properly

> again and getting exercise as best I could. In the last several

> months, I've been very fatigued and haven't had the energy to go to

> the gym. I feel good after I exercise, but I have to have nearly an

> entire morning to recover from it though.

> Again thanks for the kind welcome.

> ~

>

>

> > Hi ,

> > Welcome to the RP group.

> > Sorry to hear you have RP but you will find wonderful support

> here.

> > I have not had heart problems but do have Diabetes. It is harder

> to keep under control when you are on Prednisone. The higher my Pred

> dose, the higher my blood sugar goes.

> > However, when I consider the alternatives I realize I could not

> survive without the Pred. Are you on any meds for the Diabetes? I

> take Glucovance 2 times a day and am having good results with it.

> >

> > Sandy

> >

> >

> >

> > Dear Group;

> > I just wanted to introduce myself. My name is and I'm

> > originally from North Carolina, but currently I'm a seminarian

> in

> > Washington, DC. I've been here in DC for almost three years now.

> >

> > First, thank you for creating this group. I'm sure it will prove

> > beneficial to me as I try to sort through over 48,000 messages!

> >

> > Second, last week, on my 27th birthday no less, I was diagnosed

> with

> > Relapsing Polychondritis. I had never heard of it before. I'm

> sure

> > most all of your stories are the same, so I'll keep mine brief.

> I

> > grew up a healthy kid and played some sports in high school. The

> > year I went off to college I had some health problems. I just

> didn't

> > feel so good. Student health determined that I was diabetic.

> Well, I

> > had put on several pounds my freshman year, and after dieting I

> was

> > able to regulate my diabetes via diet and exercise. By the time

> I

> > graduated, I had to be put on several medications to help

> regulate

> > both the diabetes and the effects of the disease. In January of

> > 2001, a year and a half after entering seminary, I had an

> incident

> > of A-Fibrillation. It lasted 37 hours and I was in the CICU for

> > three days. The electrical systems of my heart began to fail

> even

> > though my heart muscle was just fine. After regulating this

> event

> > there were a few others that required hospitalization. But,

> > eventually it was regulated. However, I never felt better. I

> started

> > having cases of colds that wouldn't go away, bronchitis that

> seemed

> > to come and go not paying attention to any cough medicine I was

> > taking. Last year I also started losing weight. I dropped almost

> 50

> > pounds. Sometime in August of last year a lumps developed

> > simultaneously on my right ear, in my throat, and believe it or

> not,

> > in my right eyelid. I went to student health, bad mistake; they

> > treated me for months like I was crazy. Finally, I went to an

> ENT.

> > He did a surgical biopsy and found that these lumps were

> cartilage

> > in a state of degeneration. The scary part was the rate of

> growth.

> > They started out as an annoyance, but began to cause some pain

> by

> > October of last year. Finally, my ENT recommended a

> rheumatologist.

> > I saw him in January. He took tons of blood work tests. He also

> sent

> > me for a pulmonary test and reviewed my history. By February

> there

> > were some problems with the veins in my legs and with numbness

> in my

> > hands and feet. By now I've lost nearly 60 pounds and I felt

> tired

> > all the time. My lab work showed that there was swelling

> somewhere

> > in my body. I believe he said my C Reactive Protein something

> was

> > almost 50 and the Westergren ESR test was 50. There were other

> tests

> > that pointed towards swelling as well and the pulmonary tests

> > concluded that there were airway restrictions. So, as you can

> guess,

> > on March 11th the doc told me that I had something that wasn't

> too

> > common called Relapsing Polychondritis. He said it wasn't a good

> > thing to have. He is sending me for an MRI of my throat to

> determine

> > the extent of the damage there since it is now difficult to

> swallow

> > without overcoming the lump and hearing a loud clicking sound.

> He

> > may start me on steroids and cortisone shots, but because I am

> > diabetic he is not sure how I will react.

> >

> > So in addition to sharing my story, I wanted to know if anyone

> else

> > has had electrical problems with their heart develop as a result

> of

> > this illness. My doctor and cardiologist don't know of any

> links,

> > but it does seem related since the RP became troublesome

> immediately

> > following the heart problem.

> >

> > Thanks again for this group and your support. You are all

> remembered

> > in my daily prayers.

> >

> > Sincerely,

> >

> >

> >

> >

> >

[Guest guest]

Dear Lucy,

So nice to hear from you. My home is in Winston-Salem, NC, but for

the next four years I'll be living in Washington, DC. " I like

calling NC home... " (recall the song)... Anyway, DC is only a

temporary home, my heart is always in NC. If I recall Goldsboro is

nearer the coast than Winston-Salem, correct? Regardless, it's a

pleasure to chat with a fellow North Carolinian.

Respectfully yours,

> > > Hi ,

> > > Welcome to the RP group.

> > > Sorry to hear you have RP but you will find wonderful support

> > here.

> > > I have not had heart problems but do have Diabetes. It is

harder

> > to keep under control when you are on Prednisone. The higher my

Pred

> > dose, the higher my blood sugar goes.

> > > However, when I consider the alternatives I realize I could

not

> > survive without the Pred. Are you on any meds for the Diabetes? I

> > take Glucovance 2 times a day and am having good results with it.

> > >

> > > Sandy

> > >

> > >

> > >

> > > Dear Group;

> > > I just wanted to introduce myself. My name is and I'm

> > > originally from North Carolina, but currently I'm a

seminarian

> > in

> > > Washington, DC. I've been here in DC for almost three years

now.

> > >

> > > First, thank you for creating this group. I'm sure it will

prove

> > > beneficial to me as I try to sort through over 48,000

messages!

> > >

> > > Second, last week, on my 27th birthday no less, I was

diagnosed

> > with

> > > Relapsing Polychondritis. I had never heard of it before. I'm

> > sure

> > > most all of your stories are the same, so I'll keep mine

brief.

> > I

> > > grew up a healthy kid and played some sports in high school.

The

> > > year I went off to college I had some health problems. I just

> > didn't

> > > feel so good. Student health determined that I was diabetic.

> > Well, I

> > > had put on several pounds my freshman year, and after

dieting I

> > was

> > > able to regulate my diabetes via diet and exercise. By the

time

> > I

> > > graduated, I had to be put on several medications to help

> > regulate

> > > both the diabetes and the effects of the disease. In January

of

> > > 2001, a year and a half after entering seminary, I had an

> > incident

> > > of A-Fibrillation. It lasted 37 hours and I was in the CICU

for

> > > three days. The electrical systems of my heart began to fail

> > even

> > > though my heart muscle was just fine. After regulating this

> > event

> > > there were a few others that required hospitalization. But,

> > > eventually it was regulated. However, I never felt better. I

> > started

> > > having cases of colds that wouldn't go away, bronchitis that

> > seemed

> > > to come and go not paying attention to any cough medicine I

was

> > > taking. Last year I also started losing weight. I dropped

almost

> > 50

> > > pounds. Sometime in August of last year a lumps developed

> > > simultaneously on my right ear, in my throat, and believe it

or

> > not,

> > > in my right eyelid. I went to student health, bad mistake;

they

> > > treated me for months like I was crazy. Finally, I went to an

> > ENT.

> > > He did a surgical biopsy and found that these lumps were

> > cartilage

> > > in a state of degeneration. The scary part was the rate of

> > growth.

> > > They started out as an annoyance, but began to cause some

pain

> > by

> > > October of last year. Finally, my ENT recommended a

> > rheumatologist.

> > > I saw him in January. He took tons of blood work tests. He

also

> > sent

> > > me for a pulmonary test and reviewed my history. By February

> > there

> > > were some problems with the veins in my legs and with

numbness

> > in my

> > > hands and feet. By now I've lost nearly 60 pounds and I felt

> > tired

> > > all the time. My lab work showed that there was swelling

> > somewhere

> > > in my body. I believe he said my C Reactive Protein something

> > was

> > > almost 50 and the Westergren ESR test was 50. There were

other

> > tests

> > > that pointed towards swelling as well and the pulmonary tests

> > > concluded that there were airway restrictions. So, as you can

> > guess,

> > > on March 11th the doc told me that I had something that

wasn't

> > too

> > > common called Relapsing Polychondritis. He said it wasn't a

good

> > > thing to have. He is sending me for an MRI of my throat to

> > determine

> > > the extent of the damage there since it is now difficult to

> > swallow

> > > without overcoming the lump and hearing a loud clicking

sound.

> > He

> > > may start me on steroids and cortisone shots, but because I

am

> > > diabetic he is not sure how I will react.

> > >

> > > So in addition to sharing my story, I wanted to know if

anyone

> > else

> > > has had electrical problems with their heart develop as a

result

> > of

> > > this illness. My doctor and cardiologist don't know of any

> > links,

> > > but it does seem related since the RP became troublesome

> > immediately

> > > following the heart problem.

> > >

> > > Thanks again for this group and your support. You are all

> > remembered

> > > in my daily prayers.

> > >

> > > Sincerely,

> > >

> > >

> > >

> > >

> > >