Re: puberty and jra

[Guest guest]

,

I have also noticed that pattern with Fall and Winter time.

Spring and summer was the good times. But that also changed a few times for us

as

well. But the worst of it is still in Fall and Winter. Ummmm Could it be the

Fall pollen or just the Cold and rainy season?

Robbin

[Guest guest]

Hi ,

I haven't noticed any difference with n as she entered puberty,

regarding the arthritis. She got diagnosed at age 10 and will be 18

in a few weeks. The only pattern that we have noticed is that she

always struggles in the Fall and Winter.

Aundrea has had a tough time lately. I hope things start to turn

around for you guys. (n, 17, systemic)

On Dec 17, 2006, at 7:31 AM, sonia1md wrote:

> Hi all,

> I have a quick question. Aundrea is still flaring and mornings are

> by far the most difficult. I am working on getting the

> authorization to have her seen by the new ped. rheumatologist. The

> limbrel didn't seem to do anything for her and rather than make a

> med change with current doc it seems smart to see what the new ped.

> rheumy would like to suggest and perhaps any new tests that he would

> want to run such as the x-rays etc..

>

> My question is re puberty. Aundrea is definatly in the the puberty

> stage and I wonder if those of you with experince in this would say

> that you or your children did worse during puberty or if things

> improved after a certain time? I wondered if the onset of puberty

> had anything to do with why this flare is lasting so long and hasn't

> come under control.

>

> Your input is appreciated.

>

> thanks,

>

> sonia (aundrea 11 systemic jra/gerd)

>

>

>

[Guest guest]

,

I don't remember if puberty was hard on my JRA, but I was hospitalized for two

weeks of new meds and intense therapy at the age of twelve, so it might have

been. I imagine that it was though, because that time of the month is almost

always accompanied by a small flare for me. Being on meds that regulate the

hormone levels (like the pill) seems to help sometimes. Now I'm not suggesting

that for your daughter of course, but if in the future she has flares that seem

to coincide with that time of the month, it might help some. Otherwise,

Ibuprofen is still my best friend at that time.

JRA since 20 months old

2 children - Mikey (5), Lizzie (2) (Who was born with congenital

hydrocephalus)

sonia1md <sonia1md@...> wrote:

Hi all,

I have a quick question. Aundrea is still flaring and mornings are

by far the most difficult. I am working on getting the

authorization to have her seen by the new ped. rheumatologist. The

limbrel didn't seem to do anything for her and rather than make a

med change with current doc it seems smart to see what the new ped.

rheumy would like to suggest and perhaps any new tests that he would

want to run such as the x-rays etc..

My question is re puberty. Aundrea is definatly in the the puberty

stage and I wonder if those of you with experince in this would say

that you or your children did worse during puberty or if things

improved after a certain time? I wondered if the onset of puberty

had anything to do with why this flare is lasting so long and hasn't

come under control.

Your input is appreciated.

thanks,

sonia (aundrea 11 systemic jra/gerd)

[Guest guest]

My daughter Kendra was diagnosed at the age of 18 months then at the age of

6 or 7 went into remission for 3-4 yrs. When I asked our peds rheumy if her

being 11 and " changing " had anything to do with her arthritis coming back

she said it may. She said they see an increase of girls in that age range

with problems. When it came back for Kendra is was far worse than when she

was younger. She is still trying to get it under control. Just May of 2006

is when all this came about. Until then she was flare free!!

So I guess what I am saying is.. I myself believe that hormones DO play a

part in the flares. Nothing proven though, but I think the puberty thing

really does for some, play a part.

Jill & Kendra 11 jra

_____

From: [mailto: ] On Behalf

Of sonia1md

Sent: Sunday, December 17, 2006 9:32 AM

Subject: puberty and jra

Hi all,

I have a quick question. Aundrea is still flaring and mornings are

by far the most difficult. I am working on getting the

authorization to have her seen by the new ped. rheumatologist. The

limbrel didn't seem to do anything for her and rather than make a

med change with current doc it seems smart to see what the new ped.

rheumy would like to suggest and perhaps any new tests that he would

want to run such as the x-rays etc..

My question is re puberty. Aundrea is definatly in the the puberty

stage and I wonder if those of you with experince in this would say

that you or your children did worse during puberty or if things

improved after a certain time? I wondered if the onset of puberty

had anything to do with why this flare is lasting so long and hasn't

come under control.

Your input is appreciated.

thanks,

sonia (aundrea 11 systemic jra/gerd)

[Guest guest]

Hi ,

I don't know anything about the jra and puberty link. However,

's doctor said that the second flare can sometimes be harder

to control than the flare at onset. She had a 10 month medicated

remission on MTX and Enbrel. When we tapered the MTX down to 5 mg

every other week she flared.

Now we are up to 20 mgs of MTX and Humira and she still has some

inflammation in her hips. I read some studies on MTX and when to

withdraw, and it said that kids that responded to it, did so once

again after withdrawing and restarting. However, for us we are at a

much higher dosage. The first time she only got up to 12.5mg and

now at 20 mg she still has inflammation. (It is hard to tell, b/c

she was on Enbrel and now Humira also).

Your plan seems wise. It is always good to consult another doctor

if you are at a standstill with treatment. has been on a

biologic drug almost from the beginning, but she could hardly move

and the pain was very intense. There are huge unknowns with the

biological drugs, and that is always in the back of our minds.

Take care, and I hope Aundrea can see the new doc soon.

Sophie

's mom, age 6, systemic jra

>

> Hi all,

> I have a quick question. Aundrea is still flaring and mornings

are

> by far the most difficult. I am working on getting the

> authorization to have her seen by the new ped. rheumatologist.

The

> limbrel didn't seem to do anything for her and rather than make a

> med change with current doc it seems smart to see what the new

ped.

> rheumy would like to suggest and perhaps any new tests that he

would

> want to run such as the x-rays etc..

>

> My question is re puberty. Aundrea is definatly in the the

puberty

> stage and I wonder if those of you with experince in this would

say

> that you or your children did worse during puberty or if things

> improved after a certain time? I wondered if the onset of puberty

> had anything to do with why this flare is lasting so long and

hasn't

> come under control.

>

> Your input is appreciated.

>

> thanks,

>

> sonia (aundrea 11 systemic jra/gerd)

>

[Guest guest]

,

Aundrea hasn't started her cycle yet but I would guess that she will

within the next 6 months or so. Aundrea can't take ibuprofen due to

stomach irritation. I guess i could try giving her tylenol more

often. I am hoping the waiting game will be over soon. I was told

the insurance company could take a week or two for authorization to

see the pediatric rheumy. He should start seeing patients in early

january. my guess is that his calendar is already booked. they wont

let me schedule until i get insurance authorization. So hopefully

we will be in better shape by next month. thanks for sharing your

experience with me.

sonia (aundrea 11 systemic jra/gerd)

> Hi all,

> I have a quick question. Aundrea is still flaring and mornings are

> by far the most difficult. I am working on getting the

> authorization to have her seen by the new ped. rheumatologist. The

> limbrel didn't seem to do anything for her and rather than make a

> med change with current doc it seems smart to see what the new

ped.

> rheumy would like to suggest and perhaps any new tests that he

would

> want to run such as the x-rays etc..

>

> My question is re puberty. Aundrea is definatly in the the puberty

> stage and I wonder if those of you with experince in this would

say

> that you or your children did worse during puberty or if things

> improved after a certain time? I wondered if the onset of puberty

> had anything to do with why this flare is lasting so long and

hasn't

> come under control.

>

> Your input is appreciated.

>

> thanks,

>

> sonia (aundrea 11 systemic jra/gerd)

>

>

>

>

>

>

>

[Guest guest]

Wow , I can hardly believe that n will be 18 in just a few

weeks. I believe I came to this site when she was just 14 or so.

The years fly by. In Illinois we noticed the same pattern for

Aundrea with flares in fall and winter. Perhaps, that is still true

for Az.

I am impatiently waiting on insurance authorization for the new ped

rheumy. At least we now have one and we can see what his

suggestions will be. I guess we wont pay for a new prescription of

limbrel. Its 212 per month and it doesn't seem to have made any

difference for drea. The methotrexate increase should have kicken

in by now. Definately time for a new plan.

(aundrea 11 systemic jra/gerd)

>

> > Hi all,

> > I have a quick question. Aundrea is still flaring and mornings

are

> > by far the most difficult. I am working on getting the

> > authorization to have her seen by the new ped. rheumatologist.

The

> > limbrel didn't seem to do anything for her and rather than make a

> > med change with current doc it seems smart to see what the new

ped.

> > rheumy would like to suggest and perhaps any new tests that he

would

> > want to run such as the x-rays etc..

> >

> > My question is re puberty. Aundrea is definatly in the the

puberty

> > stage and I wonder if those of you with experince in this would

say

> > that you or your children did worse during puberty or if things

> > improved after a certain time? I wondered if the onset of puberty

> > had anything to do with why this flare is lasting so long and

hasn't

> > come under control.

> >

> > Your input is appreciated.

> >

> > thanks,

> >

> > sonia (aundrea 11 systemic jra/gerd)

> >

> >

> >

>

>

>

>

[Guest guest]

Sophie,

I read all about those same studies on mtx. I guess from the

studies it seemed no big deal to take Aundrea off the mtx. I

figured if she flared again we would restart and she respond quickly

like she did the first time and we would be just fine. I had no

idea that we would still be dealing with the flare and the increased

doses of mtx seem to have made no improvement at all. I guess this

stuff just can't be predicted but of course I now wish we would have

never made the attmept at withdrawl. I should have dealt with her

side effects more by trying the antinausea meds instead of tapering

her off the mtx. If only we could see the future...

We do like Aundrea's current dr. but he doesn't accept our insurance

and he isn't a pediatric rheumy. It seems wise to take advantage of

the first time opportunity for ped rheumy in az and also a much

needed insurance savings will be helpful. I just hope everything

will be coordinated quickly.

Thanks for your input.

sonia (aundrea 11 systemic jra/gerd)

> >

> > Hi all,

> > I have a quick question. Aundrea is still flaring and mornings

> are

> > by far the most difficult. I am working on getting the

> > authorization to have her seen by the new ped. rheumatologist.

> The

> > limbrel didn't seem to do anything for her and rather than make

a

> > med change with current doc it seems smart to see what the new

> ped.

> > rheumy would like to suggest and perhaps any new tests that he

> would

> > want to run such as the x-rays etc..

> >

> > My question is re puberty. Aundrea is definatly in the the

> puberty

> > stage and I wonder if those of you with experince in this would

> say

> > that you or your children did worse during puberty or if things

> > improved after a certain time? I wondered if the onset of

puberty

> > had anything to do with why this flare is lasting so long and

> hasn't

> > come under control.

> >

> > Your input is appreciated.

> >

> > thanks,

> >

> > sonia (aundrea 11 systemic jra/gerd)

> >

>

[Guest guest]

-Jill,

That is very interesting. It must have been very hard for you to go

from Kendra being flare free for so many years to her current

struggles. What meds are you now trying? I hope things get better

for her soon. I wonder what the increased hormones are doing that

would correlate with the flare?

Is Kendra on the jr. kids list. I am sure Aundrea would enjoy

chatting with her.

sonia (aundrea 11 systemic jra/gerd)

-- In , " Jill Hutslar " <shutslar@...> wrote:

>

> My daughter Kendra was diagnosed at the age of 18 months then at

the age of

> 6 or 7 went into remission for 3-4 yrs. When I asked our peds

rheumy if her

> being 11 and " changing " had anything to do with her arthritis

coming back

> she said it may. She said they see an increase of girls in that

age range

> with problems. When it came back for Kendra is was far worse than

when she

> was younger. She is still trying to get it under control. Just

May of 2006

> is when all this came about. Until then she was flare free!!

>

> So I guess what I am saying is.. I myself believe that hormones DO

play a

> part in the flares. Nothing proven though, but I think the

puberty thing

> really does for some, play a part.

>

>

>

> Jill & Kendra 11 jra

>

>

>

>

>

> _____

>

> From: [mailto: ]

On Behalf

> Of sonia1md

> Sent: Sunday, December 17, 2006 9:32 AM

>

> Subject: puberty and jra

>

>

>

> Hi all,

> I have a quick question. Aundrea is still flaring and mornings are

> by far the most difficult. I am working on getting the

> authorization to have her seen by the new ped. rheumatologist. The

> limbrel didn't seem to do anything for her and rather than make a

> med change with current doc it seems smart to see what the new

ped.

> rheumy would like to suggest and perhaps any new tests that he

would

> want to run such as the x-rays etc..

>

> My question is re puberty. Aundrea is definatly in the the puberty

> stage and I wonder if those of you with experince in this would

say

> that you or your children did worse during puberty or if things

> improved after a certain time? I wondered if the onset of puberty

> had anything to do with why this flare is lasting so long and

hasn't

> come under control.

>

> Your input is appreciated.

>

> thanks,

>

> sonia (aundrea 11 systemic jra/gerd)

>

>

>

>

>

>

[Guest guest]

Hi,

I'm new to this board.my name is Alice. I have a 7 yr old with poly

jra.

But thought I'd mention to .we are also in AZ. I actually met the

new rheumy this past week. He's very young, seems nice.and as you said

is a peds guy. It's true he isn't seeing patients until Jan at his

clinic, but were you aware that he is working in satellite offices in

the area? I'm not sure where exactly, but I would think with a phone

call you could get that info. We actually go to CA to see a peds guy

now. We love him, but we are pretty excited to have the new guy in town

also. Options are always nice!!

Hope you get in to see him soon!

Re: puberty and jra

Wow , I can hardly believe that n will be 18 in just a few

weeks. I believe I came to this site when she was just 14 or so.

The years fly by. In Illinois we noticed the same pattern for

Aundrea with flares in fall and winter. Perhaps, that is still true

for Az.

I am impatiently waiting on insurance authorization for the new ped

rheumy. At least we now have one and we can see what his

suggestions will be. I guess we wont pay for a new prescription of

limbrel. Its 212 per month and it doesn't seem to have made any

difference for drea. The methotrexate increase should have kicken

in by now. Definately time for a new plan.

(aundrea 11 systemic jra/gerd)

>

> > Hi all,

> > I have a quick question. Aundrea is still flaring and mornings

are

> > by far the most difficult. I am working on getting the

> > authorization to have her seen by the new ped. rheumatologist.

The

> > limbrel didn't seem to do anything for her and rather than make a

> > med change with current doc it seems smart to see what the new

ped.

> > rheumy would like to suggest and perhaps any new tests that he

would

> > want to run such as the x-rays etc..

> >

> > My question is re puberty. Aundrea is definatly in the the

puberty

> > stage and I wonder if those of you with experince in this would

say

> > that you or your children did worse during puberty or if things

> > improved after a certain time? I wondered if the onset of puberty

> > had anything to do with why this flare is lasting so long and

hasn't

> > come under control.

> >

> > Your input is appreciated.

> >

> > thanks,

> >

> > sonia (aundrea 11 systemic jra/gerd)

> >

> >

> >

>

>

>

>

[Guest guest]

*Well, interesting question. I've heard different things about this.. I

suppose like everything.. it's a range. I rememeber attending the AJAO

conference YA pilot where they had the YA's in a seperate hotel and not sure

if it had anything to do with that but I felt like we talked a lot more

intimately with one another not having to worry about offending any parents

or children. AQnyways, I recall one day talking with maybe 10 young adults

with different forms of JRA and to my shock, ALL of them had fairly

significant isssues with puberty, hormones, gynecological issues as a whole.

I was wondering if there was come connection with having autoimmune disease

and gyn issues. I had never met so many who had problems from puberty as I

myself had. I had hormone issues... also was put on the pill to try and help

but I was a bit too embarrassed to take it. Than latter, when I was put on

antiseizure medication (Neurontin and Topomax), I was told that birth

control doesn't work with those anyways. It cancels out the benefits I

guess.... something like that. I had a ovarian cyst that ruptured when I was

17 and had all kinds of stuff I was told was rather unusual for my age until

I went to this AJAO conference and met a lot of others who had similar

issues. *

*Now, in terms of JRA itself, I have met some that have said puberty brought

them a remission but more often than not I have heard that opposite. In my

own expereince, my JRA got worse. I wasnt sure if it was the additional

hormones, the pronounced growth, the angst of adolescence... I just didn't

get it. All I know is that between monthly menstration that was incredibly

painful for me and still is..... it surely wasnt great having JRA/FMS on top

of that. Someone else mentioned IBProfen being their best friend and yes,

same for me too. NOTHING seemed to help that pain but IBuprofen yet yuk for

the stomach but works like a charm. Along with heating pad... resting, etc.

Ugh.... women.. lol. *

**

*Anyways, for me, I foudn that my pain levels increased, sleep became

harder, I needed more medication and it really felt like it was getting

worse. Over the years, it did get worse slowly but didn't outgrow it. *

**

*So I don't know if there is a correlation but I think it might be something

interesting to know. I hope that your daughter gets better but I suppose

it's always a mystery. *

**

*I did ask a couple of my Gyn's if they noticed any pattern with Rheumatic

diseases and gyn issues and all said no but they also agreed to not really

having any other clients with the disease. So I wonder if its something not

brought up... or no one has picked up on a pattern.. if one even exists. *

**

*So... that's all I have to add... *

**

*Issadora*

On 12/17/06, Alice Cunningham <alice.cunningham@...> wrote:

>

> Hi,

>

> I'm new to this board.my name is Alice. I have a 7 yr old with poly

> jra.

>

> But thought I'd mention to .we are also in AZ. I actually met the

> new rheumy this past week. He's very young, seems nice.and as you said

> is a peds guy. It's true he isn't seeing patients until Jan at his

> clinic, but were you aware that he is working in satellite offices in

> the area? I'm not sure where exactly, but I would think with a phone

> call you could get that info. We actually go to CA to see a peds guy

> now. We love him, but we are pretty excited to have the new guy in town

> also. Options are always nice!!

>

> Hope you get in to see him soon!

>

> Re: puberty and jra

>

> Wow , I can hardly believe that n will be 18 in just a few

> weeks. I believe I came to this site when she was just 14 or so.

> The years fly by. In Illinois we noticed the same pattern for

> Aundrea with flares in fall and winter. Perhaps, that is still true

> for Az.

>

> I am impatiently waiting on insurance authorization for the new ped

> rheumy. At least we now have one and we can see what his

> suggestions will be. I guess we wont pay for a new prescription of

> limbrel. Its 212 per month and it doesn't seem to have made any

> difference for drea. The methotrexate increase should have kicken

> in by now. Definately time for a new plan.

>

> (aundrea 11 systemic jra/gerd)

>

>

> >

> > > Hi all,

> > > I have a quick question. Aundrea is still flaring and mornings

> are

> > > by far the most difficult. I am working on getting the

> > > authorization to have her seen by the new ped. rheumatologist.

> The

> > > limbrel didn't seem to do anything for her and rather than make a

> > > med change with current doc it seems smart to see what the new

> ped.

> > > rheumy would like to suggest and perhaps any new tests that he

> would

> > > want to run such as the x-rays etc..

> > >

> > > My question is re puberty. Aundrea is definatly in the the

> puberty

> > > stage and I wonder if those of you with experince in this would

> say

> > > that you or your children did worse during puberty or if things

> > > improved after a certain time? I wondered if the onset of puberty

> > > had anything to do with why this flare is lasting so long and

> hasn't

> > > come under control.

> > >

> > > Your input is appreciated.

> > >

> > > thanks,

> > >

> > > sonia (aundrea 11 systemic jra/gerd)

> > >

> > >

> > >

> >

> >

> >

> >

[Guest guest]

She is currently on the folic acid, metho,enbrel,naproxen,prilosec. She is

on the list but hasn't had much luck with chatting with anyone. If Aundrea

is interested maybe they could email each other?

I'm not sure what the hormones and flare have in common, but we where told

that a lot of girls have more trouble with their arthirits during puberty.

Go figure!! One more thing for the girls to have to deal with!

hope the girls get to chatting!!

Jill & Kendra 11 jra

_____

From: [mailto: ] On Behalf

Of sonia1md

Sent: Sunday, December 17, 2006 11:25 PM

Subject: Re: puberty and jra

-Jill,

That is very interesting. It must have been very hard for you to go

from Kendra being flare free for so many years to her current

struggles. What meds are you now trying? I hope things get better

for her soon. I wonder what the increased hormones are doing that

would correlate with the flare?

Is Kendra on the jr. kids list. I am sure Aundrea would enjoy

chatting with her.

sonia (aundrea 11 systemic jra/gerd)

-- In @group <mailto: %40> s.com, " Jill

Hutslar " <shutslar@...> wrote:

>

> My daughter Kendra was diagnosed at the age of 18 months then at

the age of

> 6 or 7 went into remission for 3-4 yrs. When I asked our peds

rheumy if her

> being 11 and " changing " had anything to do with her arthritis

coming back

> she said it may. She said they see an increase of girls in that

age range

> with problems. When it came back for Kendra is was far worse than

when she

> was younger. She is still trying to get it under control. Just

May of 2006

> is when all this came about. Until then she was flare free!!

>

> So I guess what I am saying is.. I myself believe that hormones DO

play a

> part in the flares. Nothing proven though, but I think the

puberty thing

> really does for some, play a part.

>

>

>

> Jill & Kendra 11 jra

>

>

>

>

>

> _____

>

> From: @group <mailto: %40> s.com

[mailto: @group <mailto: %40> s.com]

On Behalf

> Of sonia1md

> Sent: Sunday, December 17, 2006 9:32 AM

> @group <mailto: %40> s.com

> Subject: puberty and jra

>

>

>

> Hi all,

> I have a quick question. Aundrea is still flaring and mornings are

> by far the most difficult. I am working on getting the

> authorization to have her seen by the new ped. rheumatologist. The

> limbrel didn't seem to do anything for her and rather than make a

> med change with current doc it seems smart to see what the new

ped.

> rheumy would like to suggest and perhaps any new tests that he

would

> want to run such as the x-rays etc..

>

> My question is re puberty. Aundrea is definatly in the the puberty

> stage and I wonder if those of you with experince in this would

say

> that you or your children did worse during puberty or if things

> improved after a certain time? I wondered if the onset of puberty

> had anything to do with why this flare is lasting so long and

hasn't

> come under control.

>

> Your input is appreciated.

>

> thanks,

>

> sonia (aundrea 11 systemic jra/gerd)

>

>

>

>

>

>

[Guest guest]

Hi Alice and welcome to the board. Thank you so much for giving me

the information. If I get the insurance auth. soon then I will see

if I can get Aundrea in before January! It would be nice if one of

those satelite clinics were in North Phoenix.

Have you ever been to any of the arthritis foundation events?

Perhaps I have seen you at a diamondbacks game or something. Did

your son go to the jra camp last summer? Aundrea went for the first

time last year and had a blast.-

Thanks again,

sonia

-- In , " Alice Cunningham "

<alice.cunningham@...> wrote:

>

> Hi,

>

> I'm new to this board.my name is Alice. I have a 7 yr old with

poly

> jra.

>

>

>

> But thought I'd mention to .we are also in AZ. I actually

met the

> new rheumy this past week. He's very young, seems nice.and as you

said

> is a peds guy. It's true he isn't seeing patients until Jan at his

> clinic, but were you aware that he is working in satellite offices

in

> the area? I'm not sure where exactly, but I would think with a

phone

> call you could get that info. We actually go to CA to see a peds

guy

> now. We love him, but we are pretty excited to have the new guy

in town

> also. Options are always nice!!

>

>

>

> Hope you get in to see him soon!

>

>

>

>

>

> Re: puberty and jra

>

>

>

> Wow , I can hardly believe that n will be 18 in just a

few

> weeks. I believe I came to this site when she was just 14 or so.

> The years fly by. In Illinois we noticed the same pattern for

> Aundrea with flares in fall and winter. Perhaps, that is still

true

> for Az.

>

> I am impatiently waiting on insurance authorization for the new

ped

> rheumy. At least we now have one and we can see what his

> suggestions will be. I guess we wont pay for a new prescription of

> limbrel. Its 212 per month and it doesn't seem to have made any

> difference for drea. The methotrexate increase should have kicken

> in by now. Definately time for a new plan.

>

> (aundrea 11 systemic jra/gerd)

>

>

> >

> > > Hi all,

> > > I have a quick question. Aundrea is still flaring and mornings

> are

> > > by far the most difficult. I am working on getting the

> > > authorization to have her seen by the new ped. rheumatologist.

> The

> > > limbrel didn't seem to do anything for her and rather than

make a

> > > med change with current doc it seems smart to see what the new

> ped.

> > > rheumy would like to suggest and perhaps any new tests that he

> would

> > > want to run such as the x-rays etc..

> > >

> > > My question is re puberty. Aundrea is definatly in the the

> puberty

> > > stage and I wonder if those of you with experince in this

would

> say

> > > that you or your children did worse during puberty or if things

> > > improved after a certain time? I wondered if the onset of

puberty

> > > had anything to do with why this flare is lasting so long and

> hasn't

> > > come under control.

> > >

> > > Your input is appreciated.

> > >

> > > thanks,

> > >

> > > sonia (aundrea 11 systemic jra/gerd)

> > >

> > >

> > >

> >

> >

> >

> >

[Guest guest]

-Jill,

I have mentioned to Aundrea that we may have to add another med such

as enbrel and she said that she wasn't going to do anymore shots.

She gets a bit paniced over that. She is doing really well now with

mtx. but the thought of any change scares her. Does Kendra do

pretty good with all the shots?

Aundrea doesn't seem to do a whole lot with regular email. She

enjoys her instant messaging and this whole club Penguin thing.

Does Kendra have instant messaging?

I know that this is how Aundrea visits with Hannah who is 9 and also

on this list. Although both girls have been a bit under the weather

and not chatting as often right now.

sonia (Aundrea 11 systemic jra/gerd)

-- In , " Jill Hutslar " <shutslar@...> wrote:

>

> She is currently on the folic acid,

metho,enbrel,naproxen,prilosec. She is

> on the list but hasn't had much luck with chatting with anyone.

If Aundrea

> is interested maybe they could email each other?

> I'm not sure what the hormones and flare have in common, but we

where told

> that a lot of girls have more trouble with their arthirits during

puberty.

> Go figure!! One more thing for the girls to have to deal with!

>

> hope the girls get to chatting!!

>

> Jill & Kendra 11 jra

>

>

>

> _____

>

> From: [mailto: ]

On Behalf

> Of sonia1md

> Sent: Sunday, December 17, 2006 11:25 PM

>

> Subject: Re: puberty and jra

>

>

>

> -Jill,

> That is very interesting. It must have been very hard for you to

go

> from Kendra being flare free for so many years to her current

> struggles. What meds are you now trying? I hope things get better

> for her soon. I wonder what the increased hormones are doing that

> would correlate with the flare?

> Is Kendra on the jr. kids list. I am sure Aundrea would enjoy

> chatting with her.

>

> sonia (aundrea 11 systemic jra/gerd)

>

> -- In @group <mailto: %40>

s.com, " Jill

> Hutslar " <shutslar@> wrote:

> >

> > My daughter Kendra was diagnosed at the age of 18 months then at

> the age of

> > 6 or 7 went into remission for 3-4 yrs. When I asked our peds

> rheumy if her

> > being 11 and " changing " had anything to do with her arthritis

> coming back

> > she said it may. She said they see an increase of girls in that

> age range

> > with problems. When it came back for Kendra is was far worse

than

> when she

> > was younger. She is still trying to get it under control. Just

> May of 2006

> > is when all this came about. Until then she was flare free!!

> >

> > So I guess what I am saying is.. I myself believe that hormones

DO

> play a

> > part in the flares. Nothing proven though, but I think the

> puberty thing

> > really does for some, play a part.

> >

> >

> >

> > Jill & Kendra 11 jra

> >

> >

> >

> >

> >

> > _____

> >

> > From: @group <mailto: %40>

s.com

> [mailto: @group <mailto: %40>

s.com]

> On Behalf

> > Of sonia1md

> > Sent: Sunday, December 17, 2006 9:32 AM

> > @group <mailto: %40> s.com

> > Subject: puberty and jra

> >

> >

> >

> > Hi all,

> > I have a quick question. Aundrea is still flaring and mornings

are

> > by far the most difficult. I am working on getting the

> > authorization to have her seen by the new ped. rheumatologist.

The

> > limbrel didn't seem to do anything for her and rather than make

a

> > med change with current doc it seems smart to see what the new

> ped.

> > rheumy would like to suggest and perhaps any new tests that he

> would

> > want to run such as the x-rays etc..

> >

> > My question is re puberty. Aundrea is definatly in the the

puberty

> > stage and I wonder if those of you with experince in this would

> say

> > that you or your children did worse during puberty or if things

> > improved after a certain time? I wondered if the onset of

puberty

> > had anything to do with why this flare is lasting so long and

> hasn't

> > come under control.

> >

> > Your input is appreciated.

> >

> > thanks,

> >

> > sonia (aundrea 11 systemic jra/gerd)

> >

> >

> >

> >

> >

> >

[Guest guest]

Issadora,

Thanks for your input. It was pretty interesting. I guess it

appears to be another one of those questions that remains to be

studied.

I also have problems with ovarian cysts and in fact my ovulation

pain is far more intense than when I get my cycle. For my it began

when I was 19. I also have had a few ovarian cysts rupture. Its

incredibly painful isn't it. I am praying that Aundrea doesn't

inherit the same troubles. The name for painful ovulation is

actually mittleshnertz (named after a german doc that discovered

it) It involves the ovary filling up with fluid and when that fluid

leaks out it causes all the pain. The only positive thing about it

was that I had no doubt when I was ovulating because of the pain so

it was very easy to choose when I wanted to get pregnant.

sonia (aundrea 11 systemic jra/gerd)-

-- In , " Issadora " <FlyfreeIzzie@...> wrote:

>

> *Well, interesting question. I've heard different things about

this.. I

> suppose like everything.. it's a range. I rememeber attending the

AJAO

> conference YA pilot where they had the YA's in a seperate hotel

and not sure

> if it had anything to do with that but I felt like we talked a lot

more

> intimately with one another not having to worry about offending

any parents

> or children. AQnyways, I recall one day talking with maybe 10

young adults

> with different forms of JRA and to my shock, ALL of them had fairly

> significant isssues with puberty, hormones, gynecological issues

as a whole.

> I was wondering if there was come connection with having

autoimmune disease

> and gyn issues. I had never met so many who had problems from

puberty as I

> myself had. I had hormone issues... also was put on the pill to

try and help

> but I was a bit too embarrassed to take it. Than latter, when I

was put on

> antiseizure medication (Neurontin and Topomax), I was told that

birth

> control doesn't work with those anyways. It cancels out the

benefits I

> guess.... something like that. I had a ovarian cyst that ruptured

when I was

> 17 and had all kinds of stuff I was told was rather unusual for my

age until

> I went to this AJAO conference and met a lot of others who had

similar

> issues. *

> *Now, in terms of JRA itself, I have met some that have said

puberty brought

> them a remission but more often than not I have heard that

opposite. In my

> own expereince, my JRA got worse. I wasnt sure if it was the

additional

> hormones, the pronounced growth, the angst of adolescence... I

just didn't

> get it. All I know is that between monthly menstration that was

incredibly

> painful for me and still is..... it surely wasnt great having

JRA/FMS on top

> of that. Someone else mentioned IBProfen being their best friend

and yes,

> same for me too. NOTHING seemed to help that pain but IBuprofen

yet yuk for

> the stomach but works like a charm. Along with heating pad...

resting, etc.

> Ugh.... women.. lol. *

> **

> *Anyways, for me, I foudn that my pain levels increased, sleep

became

> harder, I needed more medication and it really felt like it was

getting

> worse. Over the years, it did get worse slowly but didn't outgrow

it. *

> **

> *So I don't know if there is a correlation but I think it might be

something

> interesting to know. I hope that your daughter gets better but I

suppose

> it's always a mystery. *

> **

> *I did ask a couple of my Gyn's if they noticed any pattern with

Rheumatic

> diseases and gyn issues and all said no but they also agreed to

not really

> having any other clients with the disease. So I wonder if its

something not

> brought up... or no one has picked up on a pattern.. if one even

exists. *

> **

> *So... that's all I have to add... *

> **

> *Issadora*

>

>

>

> On 12/17/06, Alice Cunningham <alice.cunningham@...> wrote:

> >

> > Hi,

> >

> > I'm new to this board.my name is Alice. I have a 7 yr old with

poly

> > jra.

> >

> > But thought I'd mention to .we are also in AZ. I actually

met the

> > new rheumy this past week. He's very young, seems nice.and as

you said

> > is a peds guy. It's true he isn't seeing patients until Jan at

his

> > clinic, but were you aware that he is working in satellite

offices in

> > the area? I'm not sure where exactly, but I would think with a

phone

> > call you could get that info. We actually go to CA to see a peds

guy

> > now. We love him, but we are pretty excited to have the new guy

in town

> > also. Options are always nice!!

> >

> > Hope you get in to see him soon!

> >

> > Re: puberty and jra

> >

> > Wow , I can hardly believe that n will be 18 in just a

few

> > weeks. I believe I came to this site when she was just 14 or so.

> > The years fly by. In Illinois we noticed the same pattern for

> > Aundrea with flares in fall and winter. Perhaps, that is still

true

> > for Az.

> >

> > I am impatiently waiting on insurance authorization for the new

ped

> > rheumy. At least we now have one and we can see what his

> > suggestions will be. I guess we wont pay for a new prescription

of

> > limbrel. Its 212 per month and it doesn't seem to have made any

> > difference for drea. The methotrexate increase should have kicken

> > in by now. Definately time for a new plan.

> >

> > (aundrea 11 systemic jra/gerd)

> >

> >

> > >

> > > > Hi all,

> > > > I have a quick question. Aundrea is still flaring and

mornings

> > are

> > > > by far the most difficult. I am working on getting the

> > > > authorization to have her seen by the new ped.

rheumatologist.

> > The

> > > > limbrel didn't seem to do anything for her and rather than

make a

> > > > med change with current doc it seems smart to see what the

new

> > ped.

> > > > rheumy would like to suggest and perhaps any new tests that

he

> > would

> > > > want to run such as the x-rays etc..

> > > >

> > > > My question is re puberty. Aundrea is definatly in the the

> > puberty

> > > > stage and I wonder if those of you with experince in this

would

> > say

> > > > that you or your children did worse during puberty or if

things

> > > > improved after a certain time? I wondered if the onset of

puberty

> > > > had anything to do with why this flare is lasting so long and

> > hasn't

> > > > come under control.

> > > >

> > > > Your input is appreciated.

> > > >

> > > > thanks,

> > > >

> > > > sonia (aundrea 11 systemic jra/gerd)

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

[Guest guest]

,

YES, I think puberty has had an effect on Elaney's JRA and I know it has

effected her other issues. Due to rapid growth her bicuspid valve has started

leaking in her heart and the rapid growth has been a part of the scoliosis and

sternum issues. Elaney started JRA symptoms at age 7 1/2. She was dx at age 8

and in remission for 1 1/2 yrs until she was 11 1/2. It seems like it all

happened at once...puberty, coming out of remission, leaking valve, scoliosis

and sternum sticking out. I pray that she doesn't have problems when she starts

her period.-----I pray that Aundrea gets to feeling better.--- &

Elaney(12 poly)

sonia1md <sonia1md@...> wrote:

Hi all,

I have a quick question. Aundrea is still flaring and mornings are

by far the most difficult. I am working on getting the

authorization to have her seen by the new ped. rheumatologist. The

limbrel didn't seem to do anything for her and rather than make a

med change with current doc it seems smart to see what the new ped.

rheumy would like to suggest and perhaps any new tests that he would

want to run such as the x-rays etc..

My question is re puberty. Aundrea is definatly in the the puberty

stage and I wonder if those of you with experince in this would say

that you or your children did worse during puberty or if things

improved after a certain time? I wondered if the onset of puberty

had anything to do with why this flare is lasting so long and hasn't

come under control.

Your input is appreciated.

thanks,

sonia (aundrea 11 systemic jra/gerd)

__________________________________________________

[Guest guest]

Issadora. and all,

I have also heard that Female Issues come along with this JRA. I have a

Sister with Diabetes, Sleep Apnea and AS. She has a period every 9 months and

she floods. Birth Control Pills makes it worse for her so she said if she has

a period once every 9 to 18 months it was ok with her. She doesn't think

about having any kids so if she continues she could have a Complete

Hysterectomy. She was Diagnosed with PCO. had 1 period back in 2000 and

nothing

else since then. She was diagnosed as well with PCO.

I do believe though If a Female has JRA or a Immune Disease there's going

to be a Female Issue. It would be a Great Session for 16 yrs old and up at a

AJAO Conference.

Birth Control Pills have a Big risk as it is. If a GYN Dr is Prescribing

them for a JRA patient maybe there should be a Push for a Study and Research

done on Females with JRA.

Shoot what is happening to the Males with JRA as well. Males are so in with

keeping this a hush hush conversation. Females will talk about it.

I was in the Dr's Office with my Hubby Sunday and was reading about the

Testosterone Levels in Men. The Symtoms are similar to issues with JRA.

Fatigue. 1 blood test can find out on a Male. There should be 1 test for the

Females. Some GYN Drs pass Female issues off as Hormonal Imbalance.

Robbin

[Guest guest]

Kendra does GREAT with her injections. Granted the first one wasn't so

good. But after that her and I have both settled into a regular routine with

them. I am the one that gives them to her. Aundrea should talk to Kendra

about them. It's not as bad as it sounds really. Kendra and I where both

scared to have to do them, but we're both better now!! Her dad hasn't had to

give her a shot yet because I am always home to do it. Kendra has

instant messaging also. When Aundrea gets to feeling better we'll have to

get them chatting!!! Kendra would enjoy that!! Kendra is home today sick

as well...

Keep in touch!!

Jill & Kendra 11 jra

_____

From: [mailto: ] On Behalf

Of sonia1md

Sent: Monday, December 18, 2006 7:57 AM

Subject: Re: puberty and jra

-Jill,

I have mentioned to Aundrea that we may have to add another med such

as enbrel and she said that she wasn't going to do anymore shots.

She gets a bit paniced over that. She is doing really well now with

mtx. but the thought of any change scares her. Does Kendra do

pretty good with all the shots?

Aundrea doesn't seem to do a whole lot with regular email. She

enjoys her instant messaging and this whole club Penguin thing.

Does Kendra have instant messaging?

I know that this is how Aundrea visits with Hannah who is 9 and also

on this list. Although both girls have been a bit under the weather

and not chatting as often right now.

sonia (Aundrea 11 systemic jra/gerd)

-- In @group <mailto: %40> s.com, " Jill

Hutslar " <shutslar@...> wrote:

>

> She is currently on the folic acid,

metho,enbrel,naproxen,prilosec. She is

> on the list but hasn't had much luck with chatting with anyone.

If Aundrea

> is interested maybe they could email each other?

> I'm not sure what the hormones and flare have in common, but we

where told

> that a lot of girls have more trouble with their arthirits during

puberty.

> Go figure!! One more thing for the girls to have to deal with!

>

> hope the girls get to chatting!!

>

> Jill & Kendra 11 jra

>

>

>

> _____

>

> From: @group <mailto: %40> s.com

[mailto: @group <mailto: %40> s.com]

On Behalf

> Of sonia1md

> Sent: Sunday, December 17, 2006 11:25 PM

> @group <mailto: %40> s.com

> Subject: Re: puberty and jra

>

>

>

> -Jill,

> That is very interesting. It must have been very hard for you to

go

> from Kendra being flare free for so many years to her current

> struggles. What meds are you now trying? I hope things get better

> for her soon. I wonder what the increased hormones are doing that

> would correlate with the flare?

> Is Kendra on the jr. kids list. I am sure Aundrea would enjoy

> chatting with her.

>

> sonia (aundrea 11 systemic jra/gerd)

>

> -- In @group <mailto: %40>

s.com, " Jill

> Hutslar " <shutslar@> wrote:

> >

> > My daughter Kendra was diagnosed at the age of 18 months then at

> the age of

> > 6 or 7 went into remission for 3-4 yrs. When I asked our peds

> rheumy if her

> > being 11 and " changing " had anything to do with her arthritis

> coming back

> > she said it may. She said they see an increase of girls in that

> age range

> > with problems. When it came back for Kendra is was far worse

than

> when she

> > was younger. She is still trying to get it under control. Just

> May of 2006

> > is when all this came about. Until then she was flare free!!

> >

> > So I guess what I am saying is.. I myself believe that hormones

DO

> play a

> > part in the flares. Nothing proven though, but I think the

> puberty thing

> > really does for some, play a part.

> >

> >

> >

> > Jill & Kendra 11 jra

> >

> >

> >

> >

> >

> > _____

> >

> > From: @group <mailto: %40>

s.com

> [mailto: @group <mailto: %40>

s.com]

> On Behalf

> > Of sonia1md

> > Sent: Sunday, December 17, 2006 9:32 AM

> > @group <mailto: %40> s.com

> > Subject: puberty and jra

> >

> >

> >

> > Hi all,

> > I have a quick question. Aundrea is still flaring and mornings

are

> > by far the most difficult. I am working on getting the

> > authorization to have her seen by the new ped. rheumatologist.

The

> > limbrel didn't seem to do anything for her and rather than make

a

> > med change with current doc it seems smart to see what the new

> ped.

> > rheumy would like to suggest and perhaps any new tests that he

> would

> > want to run such as the x-rays etc..

> >

> > My question is re puberty. Aundrea is definatly in the the

puberty

> > stage and I wonder if those of you with experince in this would

> say

> > that you or your children did worse during puberty or if things

> > improved after a certain time? I wondered if the onset of

puberty

> > had anything to do with why this flare is lasting so long and

> hasn't

> > come under control.

> >

> > Your input is appreciated.

> >

> > thanks,

> >

> > sonia (aundrea 11 systemic jra/gerd)

> >

> >

> >

> >

> >

> >

[Guest guest]

When flared, I did the same second-guessing about tapering

the MTX. But, I guess at the time it really did not make sense to

keep her on it if she had no symptoms at all for 10 months.

Besides, I think I had myself convinced that she was one of the

lucky ones that only had one episode and that it was gone forever.

I hope Aundrea gets into the ped rheumy soon. Take care.

> > >

> > > Hi all,

> > > I have a quick question. Aundrea is still flaring and

mornings

> > are

> > > by far the most difficult. I am working on getting the

> > > authorization to have her seen by the new ped.

rheumatologist.

> > The

> > > limbrel didn't seem to do anything for her and rather than

make

> a

> > > med change with current doc it seems smart to see what the new

> > ped.

> > > rheumy would like to suggest and perhaps any new tests that he

> > would

> > > want to run such as the x-rays etc..

> > >

> > > My question is re puberty. Aundrea is definatly in the the

> > puberty

> > > stage and I wonder if those of you with experince in this

would

> > say

> > > that you or your children did worse during puberty or if

things

> > > improved after a certain time? I wondered if the onset of

> puberty

> > > had anything to do with why this flare is lasting so long and

> > hasn't

> > > come under control.

> > >

> > > Your input is appreciated.

> > >

> > > thanks,

> > >

> > > sonia (aundrea 11 systemic jra/gerd)

> > >

> >

>

[Guest guest]

would probably be interested in talking as well. I know that she is

getting close to things starting but not sure how soon. Right now she is on

Mtx, Naprosyn,folic acid, cellcept and eye drops. She might be starting

Remicaid soon. Let me know if she wants to chat and i can give you 's

email addy.