(unknown)

[Guest guest]

Hi,

Christy here. It's been a while since I have responded but I too think that

many of us who have the RP have other auto immune disease. I read recently, I

believe in the survey that everyone was asked to answer, the question have

you ever had the following " illnesses " other disease. (Not quite sure how it

was exactly worded) One of the " other " that it mentioned was something called

iritis. My dad has suffered with that for years. It was so amazing to me to

read that! His eye docs have always treated him with some type of drops and I

bet ya that they were some form of pred.. When he would have this flare up

with the eyes it was very painful. The drops however took care of it. He has

not had a bout with this for years. I have been having a time with a flare in

the center of my back. I can actually feel the swelling and tenderness in the

center of my vertebra. Anyone else? My symptoms have always been ears, ribs

and ocular headaches.

Wow, this thing is crazy!!!!! My dad is 79 and I now believe that he has a f

orm of it. I always thought that this was not hereditary. Not true?

I did answer the survey. Who knows maybe we can get some recognition and more

study will be done. I pray.

Christy

[Guest guest]

Hi,

Christy here. It's been a while since I have responded but I too think that

many of us who have the RP have other auto immune disease. I read recently, I

believe in the survey that everyone was asked to answer, the question have

you ever had the following " illnesses " other disease. (Not quite sure how it

was exactly worded) One of the " other " that it mentioned was something called

iritis. My dad has suffered with that for years. It was so amazing to me to

read that! His eye docs have always treated him with some type of drops and I

bet ya that they were some form of pred.. When he would have this flare up

with the eyes it was very painful. The drops however took care of it. He has

not had a bout with this for years. I have been having a time with a flare in

the center of my back. I can actually feel the swelling and tenderness in the

center of my vertebra. Anyone else? My symptoms have always been ears, ribs

and ocular headaches.

Wow, this thing is crazy!!!!! My dad is 79 and I now believe that he has a f

orm of it. I always thought that this was not hereditary. Not true?

I did answer the survey. Who knows maybe we can get some recognition and more

study will be done. I pray.

Christy

[Guest guest]

Hi,

Christy here. It's been a while since I have responded but I too think that

many of us who have the RP have other auto immune disease. I read recently, I

believe in the survey that everyone was asked to answer, the question have

you ever had the following " illnesses " other disease. (Not quite sure how it

was exactly worded) One of the " other " that it mentioned was something called

iritis. My dad has suffered with that for years. It was so amazing to me to

read that! His eye docs have always treated him with some type of drops and I

bet ya that they were some form of pred.. When he would have this flare up

with the eyes it was very painful. The drops however took care of it. He has

not had a bout with this for years. I have been having a time with a flare in

the center of my back. I can actually feel the swelling and tenderness in the

center of my vertebra. Anyone else? My symptoms have always been ears, ribs

and ocular headaches.

Wow, this thing is crazy!!!!! My dad is 79 and I now believe that he has a f

orm of it. I always thought that this was not hereditary. Not true?

I did answer the survey. Who knows maybe we can get some recognition and more

study will be done. I pray.

Christy

[Guest guest]

Sharon, if he feels he needs to confirm the RP dx, has he done a biopsy? My

doctors knew I had it even before the biopsy, but on the off chance that it

wasn't, they did a biopsy to be sure. It was RP. Love, Judy

[Guest guest]

Christy, I had Iritis in the middle of the one MAJOR flare that I had, I was

on the steroid drops for about a month, and yes it it very painful. I do

believe it is inherited, in fact, my drs believe that my mother was exposed

to something really dreadful when she was pregnant with my older brother. He

developed Porfyria when he was in his teens, I, however, got something even

weirder - Letterer Siwee Disease when I was 15 mos old, they think they are

related and both appear to be autoimmune diseases. So I trully believe it is

inherited, Now my 26 year old daughter is being treated for Rheumatoid

Arthritis, also autoimmune. I worry for my grandchildren, so far, perfectly

healthy. I hope your back feels better, that reallly shocked me since I have

had two lumbar and one cervical disk surgeries and have arthritis head to

toe. Feel better. Love, JudyO

[Guest guest]

--- JOstry93@... wrote:

> Sharon, if he feels he needs to confirm the RP dx,

> has he done a biopsy? My

> doctors knew I had it even before the biopsy, but on

> the off chance that it

> wasn't, they did a biopsy to be sure. It was RP.

> Love, Judy

>

Hi Judy, I am guessing here, but I think he feels

that since I am on the exact same treatment as I would

be on with a confirmed dx, that nothing else needs to

be done. Like I said, I trust him 100%, he has helped

me so much! He also listens to me and actually hears

what I say. After your posts about the biopsy, I'm

not sure I want to go there at all. Love, Sharon

=====

http://www.iwin.com/register.asp?sisterslk (AT) yahoo (DOT) com

__________________________________________________

[Guest guest]

Sharon, I can't deny that it hurt like the devil, but I have a confirmed dx.

Now that I think about it, WHY did I want to know? I must be on too many

drugs! Judy

[Guest guest]

Sharon, I can't deny that it hurt like the devil, but I have a confirmed dx.

Now that I think about it, WHY did I want to know? I must be on too many

drugs! Judy

[Guest guest]

In a message dated 3/23/01 10:01:07 AM Pacific Standard Time,

JOstry93@... writes:

<< Sharon, I can't deny that it hurt like the devil, but I have a confirmed

dx.

Now that I think about it, WHY did I want to know? I must be on too many

drugs! Judy

>>

Sharon and Judy, I also had a biopsy on my ear during a flare. Guess I had a

good ENT. Didn't feel a thing. And it healed beautifully.

hugs

[Guest guest]

, I didn't feel it when he was doing it...it was AFTER the med wore

off!!!!!!! I was call him some very creative names. But I still see him,

still like him too! Judy

[Guest guest]

, I didn't feel it when he was doing it...it was AFTER the med wore

off!!!!!!! I was call him some very creative names. But I still see him,

still like him too! Judy

[Guest guest]

--- JOstry93@... wrote:

> Sharon, I can't deny that it hurt like the devil,

> but I have a confirmed dx.

> Now that I think about it, WHY did I want to know?

> I must be on too many

> drugs! Judy

>

Aren't we all??? On too many drugs that is! Not

really, but it seems that way sometimes. I guess the

only reason I'd like the dx to be confirmed, or better

yet discarded, is so that I would be able to

participate in surveys and research projects. So what

is the ear biopsy like exactly??? Is it a punch

biopsy? Sharon

=====

http://www.iwin.com/register.asp?sisterslk (AT) yahoo (DOT) com

__________________________________________________

[Guest guest]

--- JOstry93@... wrote:

> Sharon, I can't deny that it hurt like the devil,

> but I have a confirmed dx.

> Now that I think about it, WHY did I want to know?

> I must be on too many

> drugs! Judy

>

Aren't we all??? On too many drugs that is! Not

really, but it seems that way sometimes. I guess the

only reason I'd like the dx to be confirmed, or better

yet discarded, is so that I would be able to

participate in surveys and research projects. So what

is the ear biopsy like exactly??? Is it a punch

biopsy? Sharon

=====

http://www.iwin.com/register.asp?sisterslk (AT) yahoo (DOT) com

__________________________________________________

[Guest guest]

--- JOstry93@... wrote:

> Sharon, I can't deny that it hurt like the devil,

> but I have a confirmed dx.

> Now that I think about it, WHY did I want to know?

> I must be on too many

> drugs! Judy

>

Aren't we all??? On too many drugs that is! Not

really, but it seems that way sometimes. I guess the

only reason I'd like the dx to be confirmed, or better

yet discarded, is so that I would be able to

participate in surveys and research projects. So what

is the ear biopsy like exactly??? Is it a punch

biopsy? Sharon

=====

http://www.iwin.com/register.asp?sisterslk (AT) yahoo (DOT) com

__________________________________________________

[Guest guest]

In a message dated 3/24/01 5:35:49 AM Pacific Standard Time,

sisterslk@... writes:

<< So what

is the ear biopsy like exactly??? Is it a punch

biopsy? Sharon >>

Sharon, On my ear biopsy, it wasn't a punch biopsy. He just cut some of the

cartilage out and stitched it. Mine was not painful at all. The flare was

more painful.

Hugs

[Guest guest]

I'm not sure what a punch biopsy is. But they cut tissue from inside the

whorl of your ear, and some off the top of the outside of the ear. That way

they tissue from both the external and internal parts of the ear. When they

do it, you're very numb and only feel pressure no pain. It's when the

anesthetic wears off that the pain sets in! And I have a pretty high

tollerance for pain, but couple that with the active flare and I was ready to

amputate my ears myself! It was very painful, BUT I was also diagnosed

within 6 weeks of onset of RP and because of that, I have a good chance of a

nice long remission - assuming they get it totally under control. The RP is

improving, not much pain anymore, still have the hot red ears though, so I

guess I'll be on the hated Metho a while longer. I am REALLY looking forward

to remission, if only to get off the Methotrexate! It was painful, but I

feel it was worth it! I was just so lucky that my PCP recognized what it was

so quickly, and started me on Pred which worked so long as the dosage was

high enough, everytime they started to wean me off, I flared again, which is

why I had the biopsy. Love, Judy

[Guest guest]

, they did mine in the middle of a very major flare and it hurt like

hell! Judy

[Guest guest]

--- JOstry93@... wrote:

> I'm not sure what a punch biopsy is. But they cut

> tissue from inside the

> whorl of your ear, and some off the top of the

> outside of the ear. That way

> they tissue from both the external and internal

> parts of the ear. When they

> do it, you're very numb and only feel pressure no

> pain. It's when the

> anesthetic wears off that the pain sets in! And I

> have a pretty high

> tollerance for pain, but couple that with the active

> flare and I was ready to

> amputate my ears myself! It was very painful, BUT I

> was also diagnosed

> within 6 weeks of onset of RP and because of that, I

> have a good chance of a

> nice long remission - assuming they get it totally

> under control. The RP is

> improving, not much pain anymore, still have the hot

> red ears though, so I

> guess I'll be on the hated Metho a while longer. I

> am REALLY looking forward

> to remission, if only to get off the Methotrexate!

> It was painful, but I

> feel it was worth it! I was just so lucky that my

> PCP recognized what it was

> so quickly, and started me on Pred which worked so

> long as the dosage was

> high enough, everytime they started to wean me off,

> I flared again, which is

> why I had the biopsy. Love, Judy

>

I think I am in pretty good shape treatment wise. I

had the big flare in my ears in Jan. 2000, and started

treatment the next month. He put me right on

prednisone. Sorry you are having so much trouble with

the MTX. It's a beast! I was on 20 mg per week, but

was sick to my stomach 24/7. Finally it got to where

I would just look at my pills and retch. At that

point my rheumy tried me on injections of MTX, but it

was still making me sick. That is why he started me

on Azathioprine. The MTX worked great on me though.

There were many days when I wanted nothing more than a

good stiff dose of it! Changing meds always means

waiting for the new one to start taking effect and

that is not fun. Anyway, thanks for the info on the

biopsy. Also, thanks for the rain that you have been

sending our way. Could you send a bit more? Have a

beautiful day. Love, Sharon

=====

http://www.iwin.com/register.asp?sisterslk (AT) yahoo (DOT) com

__________________________________________________

[Guest guest]

Sharon, if the rain can go from East to West, you'll have enough rain for a

flood! I just want sunshine and warm temperatures! They said the temp today

would reach 50 degrees - my foot! Trust me, it is NOT 50 outside! I'm

afraid we're still going to get more snow, and my flowers haven't bloomed

yet! Last year my Crabapple tree bloomed - next day, it snowed and that was

the end of my apple blossoms!

My rhuemy just changed the dosage on my methotrexate - from 15 mg to 10, plus

he split it up so that I take 5 mg in the morning and 5 mg at night -

hopefully, that will take care of the nausea and still keep the RP under

control! Here's hoping! Love, Judy (There will be a pool in OK)

[Guest guest]

--- JOstry93@... wrote:

> Sharon, if the rain can go from East to West, you'll

> have enough rain for a

> flood! I just want sunshine and warm temperatures!

> They said the temp today

> would reach 50 degrees - my foot! Trust me, it is

> NOT 50 outside! I'm

> afraid we're still going to get more snow, and my

> flowers haven't bloomed

> yet! Last year my Crabapple tree bloomed - next

> day, it snowed and that was

> the end of my apple blossoms!

>

> My rhuemy just changed the dosage on my methotrexate

> - from 15 mg to 10, plus

> he split it up so that I take 5 mg in the morning

> and 5 mg at night -

> hopefully, that will take care of the nausea and

> still keep the RP under

> control! Here's hoping! Love, Judy (There will be

> a pool in OK)

>

Hi Judy, sure hope that the change in dose and the way

you take your MTX helps you! Keep us all informed

please. Sharon

=====

http://www.iwin.com/register.asp?sisterslk (AT) yahoo (DOT) com

__________________________________________________

[Guest guest]

Dawn, that was hysterical! My husband is going to love it! Thanks! Love,

Judy

[Guest guest]

Sharon, thanks! We'll know tomorrow - Tuesday in chemo day. And I can't

tell lyou how grateful I will be if I sail thru the day with no problems, or

even ones that I can handle. It would be nice not to hate Tuesdays any more.

Keep your fingers crossed, or better yet, say a prayer! Love, Judy

[Guest guest]

--- JOstry93@... wrote:

> Sharon, thanks! We'll know tomorrow - Tuesday in

> chemo day. And I can't

> tell lyou how grateful I will be if I sail thru the

> day with no problems, or

> even ones that I can handle. It would be nice not to

> hate Tuesdays any more.

> Keep your fingers crossed, or better yet, say a

> prayer! Love, Judy

>

Hi Judy, here's hoping that today is going much, much

better for you. I am praying for you! Love, Sharon

=====

http://www.iwin.com/register.asp?sisterslk (AT) yahoo (DOT) com

__________________________________________________

[Guest guest]

Ssharon, thanks for your thoughts and prayers. I guess God had different

plans for me. I started flaring on Sunday night, at least this time I knew

what it was and didn't waste any time getting to the Rheumy. He confirmed it

was a flare (duh!), so the Metho increased and added 20 mg of Pred for two

weeks. We're hoping that since once again it was caught so quickly that the

meds will stop the flare in it's tracks. Yesterday (Tuesday) was not

pleasant, but not as bad as it could be, and today my ears are pain-free (for

the most part), and I feel fine.

MD is still concerned about my losing my voice every time I have chemo, ENT

said it was from the Meth, Rheumy says it is NOT from the meth, but may be

the RP attacking my throat (Joy, Joy, Joy) he wants the ENT to check it out

NOW! So, here we go again! Personally, I think it's the RP, I used to have

a really nice singing voice, now I usually sing when I'm home alone. My

family used to tease me when I was a kid, said I " couldn't carry a tune in a

bucket " , now I need a trough!!

Life goes on, and hopefully, we keep going on with it!! Maybe next time!

Love, Judy

[Guest guest]

That's bad, Jim will love it! Love, Judy