Re: Bad Dreams/Naprosyn

[Guest guest]

Michele,

Great news. I bet it feels good for you knowing that Kelsey isn't

having bad dreams and for you to get sleep at night !

Teri

[Guest guest]

Teri,

Yes, I'm on top of the world knowing my baby is FINALLY sleeping! Its

definitely helping me too, but I still wake up sometimes checking on her

anyway...habit I guess. How is 's PT going? Believe it or not, Kelsey

loved going to her therapy. She thought it was fun!

[Guest guest]

Michele,

is doing great with her physical therapy. It will be short term

therapy since it is only for strenghtening and toning. Today the therapist

and I wondered if was in pain. She said the leg hurt but she answered

yes to everything else hurting too. she was cranky today too. She's only

three so it's hard to tell with her. The therapist is great with her . After

started the naprosyn she did not sleep well for a few months. Now she

sleeps well.

Teri

[Guest guest]

Teri,

I'm glad sleeps well now, I know how hard its been on us since Kelsey

was having those awful dreams. I wouldn't wish that on anybody!!! Its good

to hear her therapy is going so well. Kelsey always enjoyed going, but there

were a few times, especially in the beginning, when she would be very sore

afterwards and sometimes whiny and grouchy. Maybe that's what was wrong with

, just sore from the exercise, perhaps? Then again maybe it was just

one of those days our little 3 year olds have Hope you all have a

wonderful thanksgiving. Take care,

[Guest guest]

Hello, my name is Melodi. I am a 23 year old who has been diagnosed with

JRA since 6 years old. I often just read and don't respond, yet I must

respond to you about this because I can truly relate.

You are not crazy. It is the medicine. I got to the point, as a child,

that I would sleep walk and color on my walls, I dreampt I got hit by a car,

fell out of bed and hit my head and had to walk around school with a black

eye. It was not until then that my doctors explained that sleeping problems

such as nightmares are indeed a side effect of Naprosyn and Voltaren. It was

not in my head. Unfortunately, naprosyn works so well for me that I wasn't

able to stop the meds, however, as hard as it is, I do not take my

anti-inflammatory just before bedtime and that seems to help although I wake

up pretty stiff. If I have to, I will take a low dose earlier in the evening

and/or take a hot bath/shower just before bed. Also, I know that due to

Kelsey's age this may not be an option, I also use a heated mattress pad at

night which also helps with joint pain that I would normally use the naprosyn

for but don't because of the sleep issues. There are times when I bite the

bullet and deal with those nightmares, but it isn't fair for Kelsey to have

to do that. The doctors need to take you seriously and do their research

because it is a side effect. It may not be a common side effect, but it does

not matter if it's common or not, it is effecting your child.

I am very fortunate that I had the most aggressive and knowledgable

doctors as a child with JRA. There is hope. I am a 23 year old, Kindergarten

teacher and I know in my heart and soul that I would not be here if it was

not for my mom and doctors who truly cared and advocated for me to no end.

Continue to stress the importance of these nightmares to the doctors and if

they don't listen find another who will. Feel free to contact me with any

concerns or questions. I wish you and Kelsey all the best. Take Care!

Melodi

[Guest guest]

Thanx for the info on the Voltaren. At least now I know why le is waking

up at night.Blanca

[Guest guest]

Melodi,

Thank you for your input. Its very helpful. We are keeping a very close eye

on Kelsey until we can get to the doctor's, and if we see any sign of her

flaring we will give her the Naprosyn. Hopefully we'll get in to see the

doctor next week. For now, we're giving her Motrin 3x per day like we did

before she started Naprosyn. She has not had any bad dreams or night waking

since the 2nd night we didn't give her the Naprosyn. She has slept solid and

wakes up in a much more pleasant mood. The Motrin wasn't very helpful

before, so I'm very nervous right now, but so far, so good.

Thanks again,

[Guest guest]

Hi ,

It's sounds like you came up with a positive solution to the problem.

I'm sure Kelsey is feeling somewhat better after being able to get some

restful sleep. Well, I guess everyone is Maybe the Motrin is strong

enough to control her present level of inflammation? That would be

great. My son takes a different NSAID. Indomethacin. That might be

another option, if you do have to try something a bit stronger later on.

he hasn't had any sleep problems while on it. There were some concernas

in the past about his stomache but since that time, he's been taking

cytotec with it at each dose and hasn't had any related problems. He

takes it twice a day, 25mgs.

Take care,

Georgina

imshellrenee@... wrote:

>

> Melodi,

>

> Thank you for your input. Its very helpful. We are keeping a very close eye

> on Kelsey until we can get to the doctor's, and if we see any sign of her

> flaring we will give her the Naprosyn. Hopefully we'll get in to see the

> doctor next week. For now, we're giving her Motrin 3x per day like we did

> before she started Naprosyn. She has not had any bad dreams or night waking

> since the 2nd night we didn't give her the Naprosyn. She has slept solid and

> wakes up in a much more pleasant mood. The Motrin wasn't very helpful

> before, so I'm very nervous right now, but so far, so good.

>

> Thanks again,

>

[Guest guest]

Thanks for your message, Melodi. It's always good to hear from those who

have actually experienced the issues we are currently facing with our

children. , and a few others here are also long-timers. It's

been great to have this kind of input. Is your arthritis still active

now? Have you had periods of time when you didn't need to take meds?

Have you had any joint replacements done?

Aloha,

Georgina

sidolem@... wrote:

>

> Hello, my name is Melodi. I am a 23 year old who has been diagnosed with

> JRA since 6 years old. I often just read and don't respond, yet I must

> respond to you about this because I can truly relate.

> You are not crazy. It is the medicine. I got to the point, as a child,

> that I would sleep walk and color on my walls, I dreampt I got hit by a car,

> fell out of bed and hit my head and had to walk around school with a black

> eye. It was not until then that my doctors explained that sleeping problems

> such as nightmares are indeed a side effect of Naprosyn and Voltaren. It was

> not in my head. Unfortunately, naprosyn works so well for me that I wasn't

> able to stop the meds, however, as hard as it is, I do not take my

> anti-inflammatory just before bedtime and that seems to help although I wake

> up pretty stiff. If I have to, I will take a low dose earlier in the evening

> and/or take a hot bath/shower just before bed. Also, I know that due to

> Kelsey's age this may not be an option, I also use a heated mattress pad at

> night which also helps with joint pain that I would normally use the naprosyn

> for but don't because of the sleep issues. There are times when I bite the

> bullet and deal with those nightmares, but it isn't fair for Kelsey to have

> to do that. The doctors need to take you seriously and do their research

> because it is a side effect. It may not be a common side effect, but it does

> not matter if it's common or not, it is effecting your child.

> I am very fortunate that I had the most aggressive and knowledgable

> doctors as a child with JRA. There is hope. I am a 23 year old, Kindergarten

> teacher and I know in my heart and soul that I would not be here if it was

> not for my mom and doctors who truly cared and advocated for me to no end.

> Continue to stress the importance of these nightmares to the doctors and if

> they don't listen find another who will. Feel free to contact me with any

> concerns or questions. I wish you and Kelsey all the best. Take Care!

> Melodi

[Guest guest]

Hi Blanca,

Do you know if Trisilate is more commonly called something else? Just

wondering, because I don't think I've heard of other children with JRA

taking this med. Voltaren, Naprosyn, Indomethacin, Relafen ... I've

heard of these and others but not Trisilate.

Thanks,

Georgina

TokarJB@... wrote:

>

> My daughter le was on Naprosyn for 18 mos. and did not experiance any

> nightmares. She is 5 now. When we switched to Trisilate and now Voltaren we

> noticed her waking up and complaining of nightmares. She was on Trisilate for

> 3 mos. and her liver enzymes went way up., so now she is on Voltaren. This

> is her second month on that. Her wake-ups and nightmares started after her

> stint with Naprosyn. Blanca

[Guest guest]

Hi Everyone,

Well, although Kelsey's sleeping has been WONDERFUL for the past several

nights without taking Naprosyn, unfortunately now her wrists are a bit

swollen and causing her a little pain. She feels a little warm, like she may

be running a low grade fever, but she won't sit still long enough for me to

take her temperature! LOL She has also complained of her knees hurting a

little, but they aren't swollen. She is still moving around well, doesn't

seem to be stiff, and she's still active and playing like usual...she doesn't

appear to be feeling bad. I'm just so afraid she's getting ready to flare.

Something else interesting, her lips have been chapped for 2 days now. The

weather was rainy and cold yesterday, so I guess it could be related to that.

She has been taking Motrin since we stopped the Naprosyn, but the Motrin

didn't help her before and I'm afraid its not going to work again Its

ashame that the Naprosyn is causing so many sleep problems because it really

has controlled Kelsey's jra. My husband and I talked about it this morning

and we had to decide what would be better, a night of bad dreams or constant

pain and flaring of her jra? So, we decided we could better deal with the

bad dreams than Kelsey being sick and in pain, and of course it would

probably be best for her, so we started her back on the Naprosyn. Melodi

made a great suggestion about not taking it so close to bedtime, so tonight

we are going to give it to her with dinner, around 6pm and see if that helps

any. I'm hoping to get her in to see her doctor this week, or ASAP. I am

going to insist on a medication change due to the bad dreams/nightmares, and

if her doctor refuses we are ready to see another doctor. We will have to

travel 2-3 hours to Charlottesville at UVA Medical Center, but there are 2

pediatric rheumatologists there and no others around here. I have emailed

one of the doctors, and if I don't get a response I will call his office if

need be.

Sorry to have rambled on so long, but just thought I'd give a little update.

Kelsey may not sleep so soundly again until we get her meds changed, but I

think we made a wise choice this morning. Hopefully she won't flare. At

least we've experimented and we know how well she slept without taking the

Naprosyn. Thanks for everyone's advice and suggestions, its helped me alot

[Guest guest]

Donna,

Thanks for your suggestions. I will ask her doctor about the liquid Vioxx, I

didn't know they had it for kids, that's good to know Kelsey is supposed

to take 1 tsp of Naprosyn in the mornings, which we give her with breakfast,

and 1 1/2 tsp at night, which we are cutting back to 1 tsp and giving it no

later than 6pm. The pharmacist said it should be given at least 8 hours

apart. She is already doing a little better, the swelling in her wrists is

going down.

Again, thanks.

[Guest guest]

...

Here are a few more suggestions....try giving her the naprosyn in the

morning, like with breakfast...that worked well for my son. Do ask your

doctors about liquid Vioxx..it has been wonderful for Jonnathon, and he has

been on it a year. I truely believe it works as well as Naprosyn, if not

better than, with out the side affects. Jonnathon sees the pediatric rheumy

at Children's Hospital of Michigan, and his arthritis is managed better than

I thought possible. Good luck to you....I know how hard it is trying to

make the right decisions.

Donna

Re: Bad Dreams/Naprosyn

> Hi Everyone,

>

> Well, although Kelsey's sleeping has been WONDERFUL for the past several

> nights without taking Naprosyn, unfortunately now her wrists are a bit

> swollen and causing her a little pain. She feels a little warm, like she

may

> be running a low grade fever, but she won't sit still long enough for me

to

> take her temperature! LOL She has also complained of her knees hurting a

> little, but they aren't swollen. She is still moving around well, doesn't

> seem to be stiff, and she's still active and playing like usual...she

doesn't

> appear to be feeling bad. I'm just so afraid she's getting ready to

flare.

> Something else interesting, her lips have been chapped for 2 days now.

The

> weather was rainy and cold yesterday, so I guess it could be related to

that.

> She has been taking Motrin since we stopped the Naprosyn, but the Motrin

> didn't help her before and I'm afraid its not going to work again Its

> ashame that the Naprosyn is causing so many sleep problems because it

really

> has controlled Kelsey's jra. My husband and I talked about it this

morning

> and we had to decide what would be better, a night of bad dreams or

constant

> pain and flaring of her jra? So, we decided we could better deal with the

> bad dreams than Kelsey being sick and in pain, and of course it would

> probably be best for her, so we started her back on the Naprosyn. Melodi

> made a great suggestion about not taking it so close to bedtime, so

tonight

> we are going to give it to her with dinner, around 6pm and see if that

helps

> any. I'm hoping to get her in to see her doctor this week, or ASAP. I am

> going to insist on a medication change due to the bad dreams/nightmares,

and

> if her doctor refuses we are ready to see another doctor. We will have to

> travel 2-3 hours to Charlottesville at UVA Medical Center, but there are 2

> pediatric rheumatologists there and no others around here. I have emailed

> one of the doctors, and if I don't get a response I will call his office

if

> need be.

>

> Sorry to have rambled on so long, but just thought I'd give a little

update.

> Kelsey may not sleep so soundly again until we get her meds changed, but I

> think we made a wise choice this morning. Hopefully she won't flare. At

> least we've experimented and we know how well she slept without taking the

> Naprosyn. Thanks for everyone's advice and suggestions, its helped me

alot

>

>

>

>

> For links to websites with JRA info please visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

> To manage your subscription settings, visit:

> subscribe/

>

>

[Guest guest]

Meghann was on trisilate also I think you would find it under the silicate

(SP) grouping (aspirin based--I believe). At one point Meghann was on it

along with tolectin. Idon't remember if there was a different name for it

or not.

Sharon

Re: Re: Bad Dreams/Naprosyn

> Hi Blanca,

>

> Do you know if Trisilate is more commonly called something else? Just

> wondering, because I don't think I've heard of other children with JRA

> taking this med. Voltaren, Naprosyn, Indomethacin, Relafen ... I've

> heard of these and others but not Trisilate.

>

> Thanks,

> Georgina

>

> TokarJB@... wrote:

> >

> > My daughter le was on Naprosyn for 18 mos. and did not experiance

any

> > nightmares. She is 5 now. When we switched to Trisilate and now Voltaren

we

> > noticed her waking up and complaining of nightmares. She was on

Trisilate for

> > 3 mos. and her liver enzymes went way up., so now she is on Voltaren.

This

> > is her second month on that. Her wake-ups and nightmares started after

her

> > stint with Naprosyn. Blanca

>

>

> For links to websites with JRA info please visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

> To manage your subscription settings, visit:

> subscribe/

>

[Guest guest]

Georgina,I apparently spelled it wrong. It is called Trilisate. I know that

will help out now that you have the correct spelling. Blanca