flare up

[Guest guest]

Hi and welcome to the group. This is a wonderful place full of caring parents, kids and adults dealing with JRA. My name is Donna and I have dealt with JRA for 30 years now. You are not alone! Many of us can relate to your story. You did nothing wrong and you sure do not deserve this. No one does! Trust your instincts with your doctor and if one is not listening to you, find another. Are you seeing a rheumatologist who has experience with JRA patients? I know for many young adults who leave pediatric care it is difficult finding a doc who deals with adults who have JRA and it may be years before you find the one! Dont give up...You will find the right doc and the right medication combo. Try to hang tight and hang tough! Luckily I have not dealt with uveitis but there are many on the list who have and I am sure you will hear from them. YIKES! I agree with you about the enbrel. There are medicine programs that may be able to help you out, hav you checked into any to see if you qualify? One more question, have you ever been to an AJAO conference? I need to run, off to the orthotic office to pick up my new leg brace ( my Forest Gump shoe...).Stay in touch and fight the fight! Donna

[Guest guest]

Does your state have some type of a health plan for people that make too

much for Medicaid? I live in Colorado and we have a program for people that

make under 200% of the poverty level. For our family of 6, that's about

$60k a year. My doctor copays are $5 and my prescriptions are $3. (Whoops,

I should say these are my kids' costs. My state would not be that generous

to adults.)

Methotrexate is cheap too. I know if you have to choose between food and

meds a mom would choose food, but there are also medication assistance

programs that can pay all of your medication costs.

Good luck. I'll say a prayer for you and your kids.

Amy and Lucy, 6, poly

Flare up

I was just wanting some advise on how you guys deal with flare ups. My

daughter has been in remission since july 2008. She had a check up in

november and the doc said that there wasn't any sign of the arthritis

(in her knee). Then all of the sudden 2 weeks ago she went to bed fine

and woke up with it swollen to twice the normal size. She is taking it

in stride at the moment but how do you explain to a 6 year old that

this is going to happen for the rest of her life. Not to mention I know

that it is my fault that she is having this flare up. You see both of

my daughters have jra and my husband is a school teacher and with

doctors appointments i'm unable to work. so with money problems and

them doing so well i didn't refill their perscriptions. I didn't want

to but it was either do that or not eat. It is bad that we havn't been

able to pay the doctors and i'm so afraid that they will stop seeing my

kids. I know I'm so stupid to have stopped the medicine and I guess

seeing this flare up is God's way of telling me that I did a pretty

stupid thing.

darn i didn't mean for this to be a pity party but I really do need

some ideas of how to help my daughter deal with this.

[Guest guest]

Well - we all certainly make mistakes. My advice to you is go get

those prescriptions refilled. If you run out of money at the end of

the month for food there are food shelves. I really don't mean to

sound harsh here but I think that you would feel even worse if your

daughter experienced permanent damage to her joints because of not

getting her prescriptions refilled. I would also recommend doing

all the research you can on getting financial assistance in your

community.

Good Luck!

& Grant (11, PsA/Uveitis)

>

> Does your state have some type of a health plan for people that

make too

> much for Medicaid? I live in Colorado and we have a program for

people that

> make under 200% of the poverty level. For our family of 6, that's

about

> $60k a year. My doctor copays are $5 and my prescriptions are

$3. (Whoops,

> I should say these are my kids' costs. My state would not be that

generous

> to adults.)

>

>

>

> Methotrexate is cheap too. I know if you have to choose between

food and

> meds a mom would choose food, but there are also medication

assistance

> programs that can pay all of your medication costs.

>

>

>

> Good luck. I'll say a prayer for you and your kids.

>

>

>

> Amy and Lucy, 6, poly

>

>

>

> Flare up

>

>

>

> I was just wanting some advise on how you guys deal with flare

ups. My

> daughter has been in remission since july 2008. She had a check up

in

> november and the doc said that there wasn't any sign of the

arthritis

> (in her knee). Then all of the sudden 2 weeks ago she went to bed

fine

> and woke up with it swollen to twice the normal size. She is

taking it

> in stride at the moment but how do you explain to a 6 year old

that

> this is going to happen for the rest of her life. Not to mention I

know

> that it is my fault that she is having this flare up. You see both

of

> my daughters have jra and my husband is a school teacher and with

> doctors appointments i'm unable to work. so with money problems

and

> them doing so well i didn't refill their perscriptions. I didn't

want

> to but it was either do that or not eat. It is bad that we havn't

been

> able to pay the doctors and i'm so afraid that they will stop

seeing my

> kids. I know I'm so stupid to have stopped the medicine and I

guess

> seeing this flare up is God's way of telling me that I did a

pretty

> stupid thing.

> darn i didn't mean for this to be a pity party but I really do

need

> some ideas of how to help my daughter deal with this.

>

>

>

>

>

>

[Guest guest]

Another idea on the meds front is to try the pharmaceutical companies

directly. Some offer programs to help with the more expensive ones. Or

see if the dr can put them on MTX. That is a cheap med and it may do the

trick. I know it is hard to make a choice. Keeping food on the table is

an absolute priority. It is easy to let the meds slide, especially when

they are doing well. Please don't beat yourself up over it. You can't go

back and change the past, just move forward to what to do next. You want

to prevent any damage that might happen. As for how to deal with the

flare while you deal with the med issue, warm baths may help. Also if

you can get your hands on an OTC anti inflammatory (Alleve or something

like that) at least in the short term that may help. Make sure you talk

with the dr. Tell him/her you have not been using the meds, and what

OTC's you may give. They must know this information. The dr will

probably be able to help somehow. Before I had any prescription

coverage, my ped used to give me samples when my kids needed meds. Maybe

your kid's dr could do the same? Have you looked into any type of

insurance for kids that might be offered by your state or county? Some

have programs that at least would get the kids covered. Some hospitals

have clinics where they use a sliding fee for visits. That's what I used

when I had my first child before I had insurance coverage.

Hugs, Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of nicolestiltner

Sent: Tuesday, January 27, 2009 6:17 PM

Subject: Flare up

I was just wanting some advise on how you guys deal with flare ups. My

daughter has been in remission since july 2008. She had a check up in

november and the doc said that there wasn't any sign of the arthritis

(in her knee). Then all of the sudden 2 weeks ago she went to bed fine

and woke up with it swollen to twice the normal size. She is taking it

in stride at the moment but how do you explain to a 6 year old that

this is going to happen for the rest of her life. Not to mention I know

that it is my fault that she is having this flare up. You see both of

my daughters have jra and my husband is a school teacher and with

doctors appointments i'm unable to work. so with money problems and

them doing so well i didn't refill their perscriptions. I didn't want

to but it was either do that or not eat. It is bad that we havn't been

able to pay the doctors and i'm so afraid that they will stop seeing my

kids. I know I'm so stupid to have stopped the medicine and I guess

seeing this flare up is God's way of telling me that I did a pretty

stupid thing.

darn i didn't mean for this to be a pity party but I really do need

some ideas of how to help my daughter deal with this.

[Guest guest]

Well said Michele.

There is no since in beating yourself up over it. I think a lot of us

have been there. I too had gotten to where I stopped taking my own

meds in order to be able to keep food on the table. All the while my

health suffered and it was harder and harder for me to care for my

children who both have health issues and I am a single mother.

Believe me I have been where you are. You made a decision that was

right for you at the time. Now things have changed and all you can do

is go from here. Don't blame yourself. It will get you no where. You

work with what life throws at you. There is nothing more you can do.

=)

There are many drug companies that offer assistance and many times

your doctor will help you qualify for these programs. The

methotrexate is cheap. I had to pay for it out of pocket on my old

insurance for some reason and it was really cheap. I too agree with

trying advil or aleve until you are able to contact the doctor and

see what they say to do, but I would definitely let them know of your

situation to see if they can provide some assistance with medication

or get you in touch with a social worker who might be able to help

with financial assistance or such.

Maybe you can look into medicaid for the children.

Good luck to you. I will pray that it all works out.

Hugs,

>

> I was just wanting some advise on how you guys deal with flare ups.

My

> daughter has been in remission since july 2008. She had a check up

in

> november and the doc said that there wasn't any sign of the

arthritis

> (in her knee). Then all of the sudden 2 weeks ago she went to bed

fine

> and woke up with it swollen to twice the normal size. She is taking

it

> in stride at the moment but how do you explain to a 6 year old that

> this is going to happen for the rest of her life. Not to mention I

know

> that it is my fault that she is having this flare up. You see both

of

> my daughters have jra and my husband is a school teacher and with

> doctors appointments i'm unable to work. so with money problems and

> them doing so well i didn't refill their perscriptions. I didn't

want

> to but it was either do that or not eat. It is bad that we havn't

been

> able to pay the doctors and i'm so afraid that they will stop

seeing my

> kids. I know I'm so stupid to have stopped the medicine and I guess

> seeing this flare up is God's way of telling me that I did a pretty

> stupid thing.

> darn i didn't mean for this to be a pity party but I really do need

> some ideas of how to help my daughter deal with this.

>

[Guest guest]

Hi,

First of all,STOP beating yourself up over this.I know exactly how you feal.My

son has been in medicated remission twice since diagnosis in 2001..It is so VERY

easy to see your child doing perfect for 1+ or even 2-3+ yrs that the horror of

the bad days fade away.We have missed countless MTX and Enbrel shots but luckily

no relapse.We did have insurance woes about getting his Enbrel recertified and

he missed 4 weeks and the morning stifness started to come back.Our problem

is that we have a $500 co pay for labs and I was scared to death when out of the

blue our local hospitals out patient lab WANTED $500.I told her his labs don't

even cost $100 and we always get billed.She said she would look into it.

was called back before she came back and after labs we got the heck out of

there.Now That has a new DR. from Cincinnati Children's his script adds

CRP,a couple of kidney function tests and urinalysis that does cost a whole lot

more then $200. I

haven't taken him in between 4-6 months  and I feel awful.You need to do the

same thing I need to do.Call your ped rheumy,explain the situation and ask for

help.Most drug manufactures have programs to help if you qualify..In our case

the lab says if you can't affoard to pay you can speak with someone to help you

out.Also in our case we could make the 1 hour drive to Vanderbilt Children's in

Nashville every 2 months and not be charged that day..Only problem they are not

a not for profit hospital and they charge a WHOLE lot more then labs done

localy.

Your post helped me tonite,my husbands on workman's comp and my work is so slow

I need to ask for a layoff slip. is getting his labs done tomorrow then the

first of April before he sees the ped rheumy.

I have been a long time member but very quiet lately.With no work I don't have

much to do.We can fight our demons with the help of each other and this

list.This great list has always been my extended cyber family.

Lots of love and a big hug,

Becki and 10 1/2 systemic onset diagnosed at 2 who was too young to

remember and now to old.

________________________________

From: nicolestiltner <nicolestiltner@...>

Sent: Tuesday, January 27, 2009 6:17:00 PM

Subject: Flare up

I was just wanting some advise on how you guys deal with flare ups. My

daughter has been in remission since july 2008. She had a check up in

november and the doc said that there wasn't any sign of the arthritis

(in her knee). Then all of the sudden 2 weeks ago she went to bed fine

and woke up with it swollen to twice the normal size. She is taking it

in stride at the moment but how do you explain to a 6 year old that

this is going to happen for the rest of her life. Not to mention I know

that it is my fault that she is having this flare up. You see both of

my daughters have jra and my husband is a school teacher and with

doctors appointments i'm unable to work. so with money problems and

them doing so well i didn't refill their perscriptions. I didn't want

to but it was either do that or not eat. It is bad that we havn't been

able to pay the doctors and i'm so afraid that they will stop seeing my

kids. I know I'm so stupid to have stopped the medicine and I guess

seeing this flare up is God's way of telling me that I did a pretty

stupid thing.

darn i didn't mean for this to be a pity party but I really do need

some ideas of how to help my daughter deal with this.

[Guest guest]

Loritab comes in differing amounts of opiate, 5mg, 7.5 mg(normal amount)

up to 10mg, If you are new to the drug be mindful of what it says on the

directions. It can affect you very strongly. Long story but be careful of

driving until you know how it will affect you.

Good Luck

Tom

In a message dated 4/17/2009 9:36:11 A.M. Mountain Daylight Time,

frazmandemo@... writes:

every since i had my accident when i was 12 i have had times when my neck

would flare up.lately,it been bad.i went to the doctor and he started me on

loratab.i really haye the idea of taking more medicine.but i can not get

comfortable with my neck,back and arms the way they are.i just hope they

work.

**************Access 350+ FREE radio stations anytime from anywhere on the

web. Get the Radio Toolbar!

(http://toolbar.aol.com/aolradio/download.html?ncid=emlcntusdown00000003)

[Guest guest]

Hi,

Sorry to hear your pain is worse; I know at times that doesn't even seem

possible but then the flare up comes. I can understand the reluctance to take

meds but with the pain you have I would imagine it would be really hard to

manage without any. Lortabs are on the lower end of the pain meds; of course

they are still narcotics but I just mean there are a lot stronger ones out. Just

use them as you see needed and your Dr prescribed and you'll be fine with them.

Hope you get feeling some relief soon!

Hugs,

 

 

From: frazmandemo <frazmandemo@...>

Subject: flare up

neck pain

Date: Friday, April 17, 2009, 10:34 AM

every since i had my accident when i was 12 i have had times when my neck would

flare up.lately,it been bad.i went to the doctor and he started me on loratab.i

really haye the idea of taking more medicine.but i can not get comfortable with

my neck,back and arms the way they are.i just hope they work.

[Guest guest]

Hi,

Sorry to hear your pain is worse; I know at times that doesn't even seem

possible but then the flare up comes. I can understand the reluctance to take

meds but with the pain you have I would imagine it would be really hard to

manage without any. Lortabs are on the lower end of the pain meds; of course

they are still narcotics but I just mean there are a lot stronger ones out. Just

use them as you see needed and your Dr prescribed and you'll be fine with them.

Hope you get feeling some relief soon!

Hugs,

 

 

From: frazmandemo <frazmandemo@...>

Subject: flare up

neck pain

Date: Friday, April 17, 2009, 10:34 AM

every since i had my accident when i was 12 i have had times when my neck would

flare up.lately,it been bad.i went to the doctor and he started me on loratab.i

really haye the idea of taking more medicine.but i can not get comfortable with

my neck,back and arms the way they are.i just hope they work.

[Guest guest]

-well,i am also taking neurotine for nerve pain.it just feels like everytime i

turn around i am taking a pill.-- In neck pain ,

Barber <the_learningtree2000@...> wrote:

>

> Hi,

> Sorry to hear your pain is worse; I know at times that doesn't even seem

possible but then the flare up comes. I can understand the reluctance to take

meds but with the pain you have I would imagine it would be really hard to

manage without any. Lortabs are on the lower end of the pain meds; of course

they are still narcotics but I just mean there are a lot stronger ones out. Just

use them as you see needed and your Dr prescribed and you'll be fine with them.

Hope you get feeling some relief soon!

> Hugs,

>

>

>

>  

>  

>

>

>

>

> From: frazmandemo <frazmandemo@...>

> Subject: flare up

> neck pain

> Date: Friday, April 17, 2009, 10:34 AM

>

>

>

>

>

>

>

>

> every since i had my accident when i was 12 i have had times when my neck

would flare up.lately,it been bad.i went to the doctor and he started me on

loratab.i really haye the idea of taking more medicine.but i can not get

comfortable with my neck,back and arms the way they are.i just hope they work.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

-well,i am also taking neurotine for nerve pain.it just feels like everytime i

turn around i am taking a pill.-- In neck pain ,

Barber <the_learningtree2000@...> wrote:

>

> Hi,

> Sorry to hear your pain is worse; I know at times that doesn't even seem

possible but then the flare up comes. I can understand the reluctance to take

meds but with the pain you have I would imagine it would be really hard to

manage without any. Lortabs are on the lower end of the pain meds; of course

they are still narcotics but I just mean there are a lot stronger ones out. Just

use them as you see needed and your Dr prescribed and you'll be fine with them.

Hope you get feeling some relief soon!

> Hugs,

>

>

>

>  

>  

>

>

>

>

> From: frazmandemo <frazmandemo@...>

> Subject: flare up

> neck pain

> Date: Friday, April 17, 2009, 10:34 AM

>

>

>

>

>

>

>

>

> every since i had my accident when i was 12 i have had times when my neck

would flare up.lately,it been bad.i went to the doctor and he started me on

loratab.i really haye the idea of taking more medicine.but i can not get

comfortable with my neck,back and arms the way they are.i just hope they work.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Sometimes when my son's joints are hot, a cool washcloth over the area

helps. (Cool rather than warm.) Might be worth a try.

On Sun, Jan 3, 2010 at 10:58 AM, <Mathena@...> wrote:

>

>

> Jordon is having a very bad flare up with his JRA, he can barely walk and

> is in a lot of pain, very swollen and hot to touch but not red.

> We called the on call DR. on Friday and he told us to put warmth on it

> which we did, but Jordon couldn't stand it and screamed the entire time it

> was on(it wasn't hot Jordon has SPD), when Jordon got worse within 24hrs we

> called the on call DR. again, but all he did is put Jordon on 10 mg of

> prednisone a day which isn't helping, the only thing it is doing is making

> his Glucose readings go threw the roof, so he has to have extra insulin.

>

> The on call doctor also said that we can call his regular Doctor on Monday

> and see if he wants to do Jordon's injection's earlier than planned, and get

> an appointment with him on Tuesday hopefully.

> He has the injections planned for the end of the month for his ankles,

> knees, wrists, and knuckles.

>

> I don't know what else to do for Jordon he is in a lot of pain and crying

> most of the day.

> Does anyone have any suggestion's other than putting warmth on it?

>

> , Bryon, Jordon 9(Type 1 Diabetes, JRA, Epilepsy, Sensory

> Processing Disorder, DD), 8(Epilepsy, Congenital Heart Defect).

>

>

[Guest guest]

We were told to switch back and forth from cold to warm and back. What about

Epsom salts bath? It seemed to help na. She spent ALOT of time in the tub

when she was flared. Wish there was more I could say. Hope he gets some relief

somehow soon.

ne (na 5 Poly _MTX Remicade)

>

> >

> >

> > Jordon is having a very bad flare up with his JRA, he can barely walk and

> > is in a lot of pain, very swollen and hot to touch but not red.

> > We called the on call DR. on Friday and he told us to put warmth on it

> > which we did, but Jordon couldn't stand it and screamed the entire time it

> > was on(it wasn't hot Jordon has SPD), when Jordon got worse within 24hrs we

> > called the on call DR. again, but all he did is put Jordon on 10 mg of

> > prednisone a day which isn't helping, the only thing it is doing is making

> > his Glucose readings go threw the roof, so he has to have extra insulin.

> >

> > The on call doctor also said that we can call his regular Doctor on Monday

> > and see if he wants to do Jordon's injection's earlier than planned, and get

> > an appointment with him on Tuesday hopefully.

> > He has the injections planned for the end of the month for his ankles,

> > knees, wrists, and knuckles.

> >

> > I don't know what else to do for Jordon he is in a lot of pain and crying

> > most of the day.

> > Does anyone have any suggestion's other than putting warmth on it?

> >

> > , Bryon, Jordon 9(Type 1 Diabetes, JRA, Epilepsy, Sensory

> > Processing Disorder, DD), 8(Epilepsy, Congenital Heart Defect).

> >

> >

[Guest guest]

Put ice on it. My DD is only relieved by ice. kymberli

>

> Jordon is having a very bad flare up with his JRA, he can barely walk and is

in a lot of pain, very swollen and hot to touch but not red.

> We called the on call DR. on Friday and he told us to put warmth on it which

we did, but Jordon couldn't stand it and screamed the entire time it was on(it

wasn't hot Jordon has SPD), when Jordon got worse within 24hrs we called the on

call DR. again, but all he did is put Jordon on 10 mg of prednisone a day which

isn't helping, the only thing it is doing is making his Glucose readings go

threw the roof, so he has to have extra insulin.

>

> The on call doctor also said that we can call his regular Doctor on Monday and

see if he wants to do Jordon's injection's earlier than planned, and get an

appointment with him on Tuesday hopefully.

> He has the injections planned for the end of the month for his ankles, knees,

wrists, and knuckles.

>

> I don't know what else to do for Jordon he is in a lot of pain and crying

most of the day.

> Does anyone have any suggestion's other than putting warmth on it?

>

> , Bryon, Jordon 9(Type 1 Diabetes, JRA, Epilepsy, Sensory Processing

Disorder, DD), 8(Epilepsy, Congenital Heart Defect).

>

>

>

>

[Guest guest]

As much as I HATE Prednisone, I'd ask if his could be increased until he can

be properly seen

and get those injections.

I really hope you get some relief for him soon.

Have you tried ice packs? Parafin dips - I've heard those are great.

So sorry I can't help more than that.

~osh

Flare up

> Jordon is having a very bad flare up with his JRA, he can barely walk and

> is in a lot of pain, very swollen and hot to touch but not red.

> We called the on call DR. on Friday and he told us to put warmth on it

> which we did, but Jordon couldn't stand it and screamed the entire time it

> was on(it wasn't hot Jordon has SPD), when Jordon got worse within 24hrs

> we called the on call DR. again, but all he did is put Jordon on 10 mg of

> prednisone a day which isn't helping, the only thing it is doing is making

> his Glucose readings go threw the roof, so he has to have extra insulin.

>

> The on call doctor also said that we can call his regular Doctor on Monday

> and see if he wants to do Jordon's injection's earlier than planned, and

> get an appointment with him on Tuesday hopefully.

> He has the injections planned for the end of the month for his ankles,

> knees, wrists, and knuckles.

>

> I don't know what else to do for Jordon he is in a lot of pain and crying

> most of the day.

> Does anyone have any suggestion's other than putting warmth on it?

>

> , Bryon, Jordon 9(Type 1 Diabetes, JRA, Epilepsy, Sensory

> Processing Disorder, DD), 8(Epilepsy, Congenital Heart Defect).

>

>

>

>

[Guest guest]

For my daughter a heating pad really helps. We have also noticed that if she

stays immobile to long it makes the pain worse, so she tries to be as active as

she is able during these times. As far as the other issues, we all do the best

we can with what we have. As a mother, you did what you felt was the right

thing. I am sure that there are some resources for you and your family out there

and this list is a good starting place. Good luck to you and your family. I hope

that your daughter is feeling better soon.

Best wishes,

( 16, poly)

>

> I was just wanting some advise on how you guys deal with flare ups. My

> daughter has been in remission since july 2008. She had a check up in

> november and the doc said that there wasn't any sign of the arthritis

> (in her knee). Then all of the sudden 2 weeks ago she went to bed fine

> and woke up with it swollen to twice the normal size. She is taking it

> in stride at the moment but how do you explain to a 6 year old that

> this is going to happen for the rest of her life. Not to mention I know

> that it is my fault that she is having this flare up. You see both of

> my daughters have jra and my husband is a school teacher and with

> doctors appointments i'm unable to work. so with money problems and

> them doing so well i didn't refill their perscriptions. I didn't want

> to but it was either do that or not eat. It is bad that we havn't been

> able to pay the doctors and i'm so afraid that they will stop seeing my

> kids. I know I'm so stupid to have stopped the medicine and I guess

> seeing this flare up is God's way of telling me that I did a pretty

> stupid thing.

> darn i didn't mean for this to be a pity party but I really do need

> some ideas of how to help my daughter deal with this.

>

[Guest guest]

I have been on ldn since last year and found it helped considerably for MS

symptoms but recently am having flare up of symptoms. I am not taking an

interferon for the MS and am wondering if I should as from what I understand ldn

does not help with progression of ms just symptoms. Any comments?redrhonda