susie cue

January 26, 2002

In a message dated 1/26/02 6:27:44 PM Pacific Standard Time,

dmorgan26347@... writes:

<< SHUT SO HE GAVE ME A BIG SHOT OF PRED AND SENT ME ON MY WAY. PRED IS

WONDERFUL STUFF WHEN YOU NEED IT. I JUST DON'T LIKE THE SIDE EFFECTS. BUT I

DO LIKE THE WAY IT MAKES ME FEEL BETTER WHEN NEEDED.

HANG IN THERE GIRL

DAWN >>

Dawn, boy you got that right. The drug we love to hate. Can't live with it

or without it. We must keep remembering all the members here who have gotten

off of it. NEVER give up. We might not have won this battle, but we WILL win

the war.

hugs

January 26, 2002

HI SUSIECUE

HEY I WAS ON PRED FOR ALMOST TWO YEARS BEFORE I GOT OFF OF IT, SO HANG IN THERE. SOME PEOLPLE COME OFF FOR A WHILE AND THEN GO BACK ON, I'M WITH YOU I HATE THIS STUFF AND THE WAY IT MAKES ME FEEL. AFTER THE WEEK I'VE HAD I GUESS I CAN'T BE MUCH HELP. WENT TO THE DR YESTDAY AND MY THROAT WAS SWELLING SHUT SO HE GAVE ME A BIG SHOT OF PRED AND SENT ME ON MY WAY. PRED IS WONDERFUL STUFF WHEN YOU NEED IT. I JUST DON'T LIKE THE SIDE EFFECTS. BUT I DO LIKE THE WAY IT MAKES ME FEEL BETTER WHEN NEEDED.

HANG IN THERE GIRL

DAWN

Ted Staniec wrote:

WEll, I upped my pred another 5 mg today, now up to 40 & 40. Went up to 35 & 35 last Sat because of the eyelid & throat swelling. My left ear turned warm, red & sore yesterday, the left eye is bothering me (hope it's not iritis again) & the right ear is sore. The tip of my nose is also sore. My throat was swollen again this morning. My feet and ankles are also swollen. They haven't been this bad since I had toxemia when I was pregnant 22 years ago. Doesn't matter if I put them up, they're even swollen in the morning. I hate to play with the meds but I don't know what else to do. I go to the rheumy on Monday & hopefully will start the Imuran.

This is getting old real fast. I have spent the week crying because I am so depressed. Have been referred to a neurologist about the dizzy spells & falling since my PCP says the RP sometimes attacks the brain. I had an echocardiogram in July which was fineI & an MRI of the brain per the ophthalmologist which showed some ischemic changes caused by my high blood pressure so that has been ruled out for the dizzy spells. I have only felt well for about 3 weeks in October & November. Resting doesn't seem to help. I have been so good about that since it helped in October.

I don't know what to do. I am so frustrated & no one can help because they don't know that much about the RP. I don't know what I did to deserve this.

I know it seems like all I do is complain when I go on the board, but I just need someone to talk to that understands. I'm not handling this very well. I don't lilke being sick. Has anyone else been sick for so long with this. I've been on 60 of pred since Thanksgiving, went to 70 last week & am now at 80.

Thanks for your shoulders,

SusiecueDISCLAIMER!!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

February 3, 2002

, Thanks for your help. I think we all tend to " wait ' a little too

long, hoping it will just go away. I know I do, and am always sorry after.

Sounds like you have wonderful doctors. You can NEVER preach too much here.

LOL I'm known as the nag. lOl Just get on that bandstand and don't get off.

LOL Eventually it will all sink into our brains. LOL

Hope you have a good sunday. Just relax and enjoy.

hugs

February 3, 2002

Dear Susie Cue:

My mom, Carol, and I were just reading your email. (My mom has RP).

We weren't sure if anyone has responded to your email since we are

just catching up on our emails.

Anyway, my mom has been going through similar symtoms. First thing,

do you have a pulminologist? They need to scope you or do a CT Scan

to check your throat and bronchial tubes. My mom was being treated

for a long time by just a PCP and rheumy. It wasn't until a

pulminologist looked at her and we discovered that her throat and

bronchial tubes were collapsing. We are know trying to get my mom

situated for stent implants. We just felt you should know this, so

you can get immediate help to stop it from getting worse.

Now, in December, mom saw Dr. Trentham, a rheumy at Beth Israel in

Boston (he is very familiar with RP). My mom has been on as much as

160 mgs. of pred. Dr. Trentham felt that was way to much. Said that

she needed to get done on pred. since it causes major weight gain,

the weight gain can cause breathing problems by adding more pressure

obviously. So he recommended that my mom get down to 10 or 15 or

even 20 lmgs. of prednisone. Then if she has an RP flare she is to

take a low dose of Cellcept to control the flare. Now, when my mom

is having an rp flare, her ears are red and swollen and her nose

begins to saddle. She does not experience joint pain like some other

folks do. Also, There is a blood test that can be taken to determine

if you are having a RP flare at the momenet, but if you are on high

doses of pred. it may mask the RP flare in the test results.

Also, because everything is collapsing, if my mom gets my cold or any

infection she needs to treat it quickly. We recently let a cold go

and she ended up in ICU for 7 days because her lungs could not handle

it like mine would. NOw she did not have a RP flare then, but the

damage done by the RP to the lungs made her infection difficult.

We just felt that if we shared my mom's experience then may be it

might help you. We just hope you get immediate attention, because we

learned the hard way that you need to take action quickly to stop the

damage the RP can do.

Hang in there, and email us and the group anytime.

Love,

Carol and amber

February 3, 2002

susie cue

> Dear Susie Cue:

> My mom, Carol, and I were just reading your email. (My mom has RP).

> We weren't sure if anyone has responded to your email since we are

> just catching up on our emails.

>

> Anyway, my mom has been going through similar symtoms. First thing,

> do you have a pulminologist? They need to scope you or do a CT Scan

> to check your throat and bronchial tubes. My mom was being treated

> for a long time by just a PCP and rheumy. It wasn't until a

> pulminologist looked at her and we discovered that her throat and

> bronchial tubes were collapsing. We are know trying to get my mom

> situated for stent implants. We just felt you should know this, so

> you can get immediate help to stop it from getting worse.

>

> Now, in December, mom saw Dr. Trentham, a rheumy at Beth Israel in

> Boston (he is very familiar with RP). My mom has been on as much as

> 160 mgs. of pred. Dr. Trentham felt that was way to much. Said that

> she needed to get done on pred. since it causes major weight gain,

> the weight gain can cause breathing problems by adding more pressure

> obviously. So he recommended that my mom get down to 10 or 15 or

> even 20 lmgs. of prednisone. Then if she has an RP flare she is to

> take a low dose of Cellcept to control the flare. Now, when my mom

> is having an rp flare, her ears are red and swollen and her nose

> begins to saddle. She does not experience joint pain like some other

> folks do. Also, There is a blood test that can be taken to determine

> if you are having a RP flare at the momenet, but if you are on high

> doses of pred. it may mask the RP flare in the test results.

>

> Also, because everything is collapsing, if my mom gets my cold or any

> infection she needs to treat it quickly. We recently let a cold go

> and she ended up in ICU for 7 days because her lungs could not handle

> it like mine would. NOw she did not have a RP flare then, but the

> damage done by the RP to the lungs made her infection difficult.

>

> We just felt that if we shared my mom's experience then may be it

> might help you. We just hope you get immediate attention, because we

> learned the hard way that you need to take action quickly to stop the

> damage the RP can do.

>

> Hang in there, and email us and the group anytime.

>

> Love,

>

> Carol and amber

>

> 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

>

February 3, 2002

Carol, Amber, and anyone else with similar symptoms:

Because of my pulmonary involvement, I see my pulmonologist about every 3-4

weeks and my rheumatologist only once every 3 months, so I can really relate

to Carol's RP condition. I actually don't flare anywhere else since I've

been on the Cytoxan. BUT...the quick reaction to any cold or bronchial

symptoms can really make a big difference. I've been told, warned, and put

on notice that I'm to get into my pulmonologist or PCP asap for antibiotics

at the first hint of cold /flu symptoms. It's only happened twice so far

and they usually do a chest x-ray just to see what things look like in case

things get worse instead of better after the antibiotics. I'm on my second

round of antibiotics (Tequin) for this bronchitis and my pulmonologist gave

me 4 refills for it just in case as he says there is some really bad

respiratory bug going around in the Kansas City area. He also grounded me

for the next 2-3 weeks. I saw him on a Monday and knew that he'd spent most

of the weekend admitting patients in-hospital and also his little boy had

come down with this bug, so he may have over-reacted with me, but he's seen

me with respiratory distress and we don't want to go there again! He's an

awesome doc and friend.

Sorry if I sound like I'm preaching, but I know we sometimes want to " wait

and see " like we used to before this cRaP took up residence in our bodies.

It's a mind-set I've had to really work on.

Y'all have a wonderful Sunday. I'm stuck inside on this sunny day and am

trying not be be cranky. Wahhhhhhhhhh.