flare

March 3, 1999

Hi ,

Is Alecia taking any antacid? Diego is taking and doesn't have stomach

problems. when he is flaring I give a bath to him, in lukewarm water with

salt... This helps a lot, relax the body, doesn't remove the pain totally

but helps....

I hope Alecia is better very soon...

Take care,

--------------

[ ] flare

From: RPerre3314@...

Hi all,

I am sorry to say that i think Alecia is on the way to having a flare. UGH

SIGH!

She has been battling with this one for a while it seemed to go away and now

it is coming back again.Her ankles are loosing the range of motion i can

tell

the PT also said that her right ankle has lost some motion to confirm my

fear

last week.It seems to be moving on to the other ankle now.She is very

sensitive to touch today every little wrong touch or bang to an infected

area

hurts.She is unable to do her excersises because of the pain.She is still

complaining of stomach aches.Tomorrow i will have to call the doc to see

what

i should do about the naproxen.I am not looking forward to a full blown

flare.I am concerned she is very tired and pale.

All I can do for now is just pray for the best.

Hope all is well with your families and everyones child feels up to par.

regards,

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March 4, 1999

Hi ,

Sorry to hear that Alecia is not feeling so good. I understand how you must be

feeling. There are so many ups and downs for the patient and their family. I

guess we never know when something or other will show up, again.

Maybe you should ask the doctor about trying a different NSAID, if the naproxen

may be causing her stomache upset. There are so many different types. We've

tried

four. Or maybe you could ask them about a medicine called cytotec. Josh has been

taking that for a while, to help protect his stomache from the NSAID's. Have you

had any recent blood work done, to check on things like the SED rate? That

indicates how much inflammation is going on in their body and is helpful in

determining if the medications are properly controlling the illness.

Good luck with this and know that you and your daughter will be in our thoughts.

Take Care,

Georgina

November 5, 1999

Cefalexin (sp?) Works miracles!!!!! I had quite a bad flare up a couple

of years ago (before PA) and my dermo gave me the antibiotic along with

a topical ointment and it was gone completely within 1.5 weeks. I think

I have only had to go on antibiotics about 2-3 times in the course of 13

years.

Dez

February 16, 2000

Hi Gillian! I am (sort of) menopausal. About 10 years ago my body decided

to stop making estrogen. But according to the ultrasounds I have had, I am

as fertil as a 16 year old (why don't I feel like one then)! It took about

5 years before we (my gynecologist and me) had the estrogen under control.

It seems the estrogen pills that I tried were either destroyed by the

enzymes in my stomach or the liver would hypermetabolize them. There the

estrogen would never reach my blood stream. My family can tell you about

those dark days and flying trash can lids!!!!!!!! My dr. finally prescribed

an estrogen patch along with an endometrial ablation (because of the severe

bleeding I had). I was fine until last year when I started having an

absorption problem. Right around the time I was diagnosed with PA. It

turned out I had too much estrogen. You should have just under 200. I had

over 400. Turns out you have the same symptoms whether you have too much

estrogen or not enough. (Don't ya love being a women!) My estrogen level

is finally back where it is suppose to be. The PA is still giving me grief

but not as bad as when my estrogen was too high. My rheumy agrees there is

a correlation between the two. Problem is no one has ever done any studies

on it. I think it's time they start!! denise in michigan :>

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January 18, 2002

Hi , I'm so sorry to hear about n....this will be her 13th

birthday?

was put on propanolol and still takes it for the headaches she

was getting. They were bad and nothing would work for her.

She still gets them on occasion but they are not as severe and

controllable with ultram or butalbital.

Please keep us posted about the lab work.

Talk to you soon.

Dayna Drennan

flare

Dear Georgina, Well, unfortunately after two years I think n is

flaring again. We are going doctor to doctor and getting tests done,

but I

think at the end it will show that the flare is back. n has been

off

of steroids for ten months now. Her birthday is tomorrow and she has

been

sick for about 8 days. She doesn't flare in the typical way so it always

confuses the docs. She has a terrible headache 24/7, and abdominal

tenderness. No swelling at this time, but the back of her legs hurt.

She

hasn't gone to school all week. Hopefully we will get blood tests back

today. Nothing stops the headaches. This is how she flared exactly two

years ago. I gotta go, lots of things to do. See ya.

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January 18, 2002

--- W and C Price <immasche@...> wrote:

>

> Dear Georgina, Well, unfortunately after two years

> I think n is

> flaring again. We are going doctor to doctor and

> getting tests done, but I

> think at the end it will show that the flare is

> back. n has been off

> of steroids for ten months now. Her birthday is

> tomorrow and she has been

> sick for about 8 days. She doesn't flare in the

> typical way so it always

> confuses the docs. She has a terrible headache

> 24/7, and abdominal

> tenderness. No swelling at this time, but the back

> of her legs hurt. She

> hasn't gone to school all week. Hopefully we will

> get blood tests back

> today. Nothing stops the headaches. This is how

> she flared exactly two

> years ago. I gotta go, lots of things to do. See

> ya.

>

Hi , My daughter Jessie, polyJRA with related

uveitis, flares in EXACTLY the same manner. I think

this is the first time I've ever read that someone

elses child does this as well. It always starts with

horrible headaches and stomach pains (sometimes she

will even vomit from this). She gets lethargic as

well and wants to sleep all the time. It almost

resembles a bout of the the flu or something similar.

Then, sure enough, within a few weeks the joints start

to inflame and the tummy troubles will continue

throughout the entire flare. She is even one of those

rare polyJRA kids who get intermittant rashes and

fevers (although no systemic features that would

change her dx to systemic JRA).

I'm sending hopes that n isn't flaring and that

this is just a fluke.

((HUGS)) from both of us to both of you,

__________________________________________________

January 18, 2002

sorry to hear about your child the headaches sounds so familar

melissa had a bad headache last year that lasted 16 weeks i believe

ended up found out she had a psuedo celebri tumor the headaches finally did

go away after several medications the last being pamelor

and the spinal tab to release the fluid in the spinal cord for some reason

the fluid gets to much in that area so far shes doing ok with that knock on

wood she will develop a headache once in a while but its not as bad as it

use to be

ask your doctor about this the way they found it on melissa is through a MRI

and a CAT scan

hope yall are doing ok

Robbin

January 18, 2002

W and C Price

hi

with the knowledge we all know on here and each explaining this JRA little by

little

what experiences we have with the kids and what they go through

this is another piece of the puzzle to understanding another level of this

disease

yall mentioned lethargic bingo another flag goes up same as did

last year

sleep all the time the doctors had her on this medication and that nothing

seemed to work this puzzle the doctor and they sent her to a neuro surgeon

by this time i really thought this disease was really going to get her

after seeing this dr he contacted melissas dr and confirmed yes it was a

tumor

not cancer though but a pseudo celebri tumor this kind of tumor is like a

balloon

in the brain that will fill with fluid no real way to drain it with

medication

but only a spinal tap to relieve this fluid build up

they did 1 spinal tap with no success they went and did 2 more in a in

hospital

day stay because melissa is so sensitive on her spine they gave her

morphine but that didnt help to calm her after the 2nd try

they stopped but was able to draw some fluid off her headaches were relieved

she also was sick to her stomach similar to a migraine headache

this is so weird that WE as parents SEE connections that doctors dont

please let your doctor know of this and this may help yall from going through

tests not needed and putting the kids through it also

Robbin

January 22, 2002

Hi ,

My heart goes out to you. It made me so sad to read about n going through such a hard time again. It can be so scary, especially when we see a familiar pattern repeating and of course ... we fear the worst. I do hope that it won't get any worse and that she'll start feeling better very soon, hopefully before a full-blown flare. Have the doctors made any changes in her meds, other than the treatment for the headaches? I guess that depends on what the blood tests showed. I noticed that several people have written in with comments and advise about headaches. We don't have any experience with that but it must be awful. Please know that you will both be in our thoughts.

Take Care,

Georgina

Well, unfortunately after two years I think n is flaring again. We are going doctor to doctor and getting tests done, but I think at the end it will show that the flare is back. n has been off of steroids for ten months now. Her birthday is tomorrow and she has been sick for about 8 days. She doesn't flare in the typical way so it always confuses the docs. She has a terrible headache 24/7, and abdominal tenderness. No swelling at this time, but the back of her legs hurt. She hasn't gone to school all week. Hopefully we will get blood tests back today. Nothing stops the headaches. This is how she flared exactly two years ago. I gotta go, lots of things to do. See ya.

March 17, 2004

Hi everyone,gosh i'm so far behind on news i don't think i'll ever

catch up!i went to dr's yesterday,and it seems that practically every

simptom i have is related to the pred.so because of all the side

effects i'm having he is weaning me very quickly off of it,like 10

mg. a week.what i need to know is what to expect if it turns out to

be too fast? will i have any particular symptoms that i will know are

the cause? i would appreciate imput so i know if what i experience is

normal or something i should call the doc about.thanks and a very

happy St. s Day to everyone.love elly

March 17, 2004