naproxen

[Guest guest]

Hi Beverly,

I think we have " spoken " before - either here or on the JRA group.

We also see the rheumatologists at Stanford. My daughter, who is 2,

suffers from periodic fevers with few other symptoms. We still

don't have a definite diagnosis, but , FMF and Systemic JRA are

among the possibilities. She has been on Naprosyn since January of

this year until very recently. Initially the Naprosyn seemed to do

wonders - it brought down a fever that nothing else (tylenol,

motrin) was effecting and we were considering putting her back on

steroids (she was on steroids for 3 months after a very bad

episode). But after a few months, she started to get the fevers

again - they were shorter and didn't go as high - but they still

came regularily. We also tried Coltricine (the medication for FMF),

but that didn't seem to help either. We have now taken her off of

everything and to see what happens. So far she's been ok, but I'm

waiting to see what the next fever is like. My daughter doesn't

have any signs of arthritis, but she's only 2 so its hard to tell.

She has not had a rash either. So we aren't sure what is going on.

Its great to hear that the naprosyn is working. If it is JRA, its

great that such a relatively benign medication is working. The

doctors at Stanford told us that they have patients who take

naprosyn for years and as long as the side effects aren't a problem

(such as stomach irratation) than that isn't a problem. The reason

we took my daughter off of it is that it didn't seem to be helping

anymore so we wanted to see how she was without it.

I know this probably isn't very helpful, but I just wanted you to

know that we have tried naprosyn as well with mixed results. Thats

great that you are seeing Dr. Kastner soon - we are still on the

wait list. I'm really hoping he will be able to shed some light on

our situation.

Good luck and definitely keep us posted!

am (mom to Layla, 2 years old)

> Hi Fran and Families,

>

> Shane, my 8 year old son was diagnosed with when he was a

> toddler. Over the years, his symptoms have changed. When he gets

his

> fevers, aches, pains, vomiting, etc. it is very severe (and I

thought

> it was bad when he was little!!!) It seems that as he as gotten

older

> his symptoms have gotten worse. Without the prednisone to knock

the

> fever out, Shane suffers immensely. Motrin and Tylenol doesn't

> really work anymore for him. His body is under so much stress

from

> the fevers and pain that twice he has been diagnosed with having

heart

> murmurs due to the fevers. I always get it checked when he is not

> fevering and the doctors say it is no longer present.

>

>

> Last year he started getting rashes periodically (not while he was

> fevering, but always after given Prednisone). I was told he is

not

> allegic to the pred. We've had his rash biopsied and we were told

> it's a very common histime (sp?) rash. Another new symptom that

> started last December/January was that his body hurt ALL the

time.

> Leg pain, had trouble walking, stomach pain, eye pain (stabbing

> feeling, and at times, sensitivity to light).

>

> I went to Shane's rhummy doc at UCSF and addressed changes and she

> still said she thought he had . I wasn't convinced and I

wanted

> a second opinion. I then went to Stanford and was told that he

may

> have JRA. He was given Naproxen last March (250 mg. twice a day)

and

> all of his symptions have disappeared, including the fevers.

>

> We are scheduled to see Dr. Kastner next month Sept. 20th and I

plan

> on asking him this question. However, I am wondering if anyone

else

> is taking Naproxen. It has been a God send. Like so many like

you,

> Shane has been tested for everything and it's come back negative

> (HIDS, TRAPS, cyclic neutropenia). I'm not convinced that Shane

has

> JRA and I'm not sure he has . SOOOOOOO hard to diagnosed.

> However, the Naproxen is working!!

>

> I'm wondering if you can have a genetic disease like TRAPS, HIDS,

or

> where Naproxen works. Or is it only for disease like JRA.

I

> only know that it's working for Shane as an anti-inflammatory

agent

> and I don't know how long he should be on this drug.

>

> Any info would be truly helpful. Fran any ideas?

>

> Thanks and I hope all of us one day will find answers for our

little

> ones!!

>

> Beverly Dettis

> Roseville, CA

> Mom to Shane (8 w//JRA?), Nick, 10 and Madalyn, 5

[Guest guest]

Hi am,

Thanks for your quick reply. It will be interesting to see if or when Layla

has any changes since she's been off any medication. Do the doctors at

Stanford think she has FMF? I hope you get some answers soon.

Beverly

Re: Naproxen

Hi Beverly,

I think we have " spoken " before - either here or on the JRA group.

We also see the rheumatologists at Stanford. My daughter, who is 2,

suffers from periodic fevers with few other symptoms. We still

don't have a definite diagnosis, but , FMF and Systemic JRA are

among the possibilities. She has been on Naprosyn since January of

this year until very recently. Initially the Naprosyn seemed to do

wonders - it brought down a fever that nothing else (tylenol,

motrin) was effecting and we were considering putting her back on

steroids (she was on steroids for 3 months after a very bad

episode). But after a few months, she started to get the fevers

again - they were shorter and didn't go as high - but they still

came regularily. We also tried Coltricine (the medication for FMF),

but that didn't seem to help either. We have now taken her off of

everything and to see what happens. So far she's been ok, but I'm

waiting to see what the next fever is like. My daughter doesn't

have any signs of arthritis, but she's only 2 so its hard to tell.

She has not had a rash either. So we aren't sure what is going on.

Its great to hear that the naprosyn is working. If it is JRA, its

great that such a relatively benign medication is working. The

doctors at Stanford told us that they have patients who take

naprosyn for years and as long as the side effects aren't a problem

(such as stomach irratation) than that isn't a problem. The reason

we took my daughter off of it is that it didn't seem to be helping

anymore so we wanted to see how she was without it.

I know this probably isn't very helpful, but I just wanted you to

know that we have tried naprosyn as well with mixed results. Thats

great that you are seeing Dr. Kastner soon - we are still on the

wait list. I'm really hoping he will be able to shed some light on

our situation.

Good luck and definitely keep us posted!

am (mom to Layla, 2 years old)

> Hi Fran and Families,

>

> Shane, my 8 year old son was diagnosed with when he was a

> toddler. Over the years, his symptoms have changed. When he gets

his

> fevers, aches, pains, vomiting, etc. it is very severe (and I

thought

> it was bad when he was little!!!) It seems that as he as gotten

older

> his symptoms have gotten worse. Without the prednisone to knock

the

> fever out, Shane suffers immensely. Motrin and Tylenol doesn't

> really work anymore for him. His body is under so much stress

from

> the fevers and pain that twice he has been diagnosed with having

heart

> murmurs due to the fevers. I always get it checked when he is not

> fevering and the doctors say it is no longer present.

>

>

> Last year he started getting rashes periodically (not while he was

> fevering, but always after given Prednisone). I was told he is

not

> allegic to the pred. We've had his rash biopsied and we were told

> it's a very common histime (sp?) rash. Another new symptom that

> started last December/January was that his body hurt ALL the

time.

> Leg pain, had trouble walking, stomach pain, eye pain (stabbing

> feeling, and at times, sensitivity to light).

>

> I went to Shane's rhummy doc at UCSF and addressed changes and she

> still said she thought he had . I wasn't convinced and I

wanted

> a second opinion. I then went to Stanford and was told that he

may

> have JRA. He was given Naproxen last March (250 mg. twice a day)

and

> all of his symptions have disappeared, including the fevers.

>

> We are scheduled to see Dr. Kastner next month Sept. 20th and I

plan

> on asking him this question. However, I am wondering if anyone

else

> is taking Naproxen. It has been a God send. Like so many like

you,

> Shane has been tested for everything and it's come back negative

> (HIDS, TRAPS, cyclic neutropenia). I'm not convinced that Shane

has

> JRA and I'm not sure he has . SOOOOOOO hard to diagnosed.

> However, the Naproxen is working!!

>

> I'm wondering if you can have a genetic disease like TRAPS, HIDS,

or

> where Naproxen works. Or is it only for disease like JRA.

I

> only know that it's working for Shane as an anti-inflammatory

agent

> and I don't know how long he should be on this drug.

>

> Any info would be truly helpful. Fran any ideas?

>

> Thanks and I hope all of us one day will find answers for our

little

> ones!!

>

> Beverly Dettis

> Roseville, CA

> Mom to Shane (8 w//JRA?), Nick, 10 and Madalyn, 5

[Guest guest]

Hi Beverly,

The doctors at Stanford think FMF is a possibility, although she

doesn't really fit the symptoms (no abdominal pain, no arthritis),

at least not yet. But we did the genetic testing through GeneDx and

they found one of the gene mutations for FMF. You need two gene

mutations for a definite diagnosis, but since they don't know what

all of the mutations are, its a possibility. There is also some

research that has found that people with the gene mutation she has

have " FMF like " symptoms, but its supposed to be responsive to the

colchicine, and we didn't see any improvement with the colchicine.

Thats why we are hoping Dr. Kastner will be able to help - he seems

to be the only one with significant experience with FMF. Depending

on how her fevers go without any medication, we may give the

colchicine another try and give it longer to see if she may just

have a delayed response.

Good luck!

am

> > Hi Fran and Families,

> >

> > Shane, my 8 year old son was diagnosed with when he was a

> > toddler. Over the years, his symptoms have changed. When he

gets

> his

> > fevers, aches, pains, vomiting, etc. it is very severe (and I

> thought

> > it was bad when he was little!!!) It seems that as he as gotten

> older

> > his symptoms have gotten worse. Without the prednisone to knock

> the

> > fever out, Shane suffers immensely. Motrin and Tylenol doesn't

> > really work anymore for him. His body is under so much stress

> from

> > the fevers and pain that twice he has been diagnosed with having

> heart

> > murmurs due to the fevers. I always get it checked when he is

not

> > fevering and the doctors say it is no longer present.

> >

> >

> > Last year he started getting rashes periodically (not while he

was

> > fevering, but always after given Prednisone). I was told he is

> not

> > allegic to the pred. We've had his rash biopsied and we were

told

> > it's a very common histime (sp?) rash. Another new symptom that

> > started last December/January was that his body hurt ALL the

> time.

> > Leg pain, had trouble walking, stomach pain, eye pain (stabbing

> > feeling, and at times, sensitivity to light).

> >

> > I went to Shane's rhummy doc at UCSF and addressed changes and

she

> > still said she thought he had . I wasn't convinced and I

> wanted

> > a second opinion. I then went to Stanford and was told that he

> may

> > have JRA. He was given Naproxen last March (250 mg. twice a

day)

> and

> > all of his symptions have disappeared, including the fevers.

> >

> > We are scheduled to see Dr. Kastner next month Sept. 20th and I

> plan

> > on asking him this question. However, I am wondering if anyone

> else

> > is taking Naproxen. It has been a God send. Like so many like

> you,

> > Shane has been tested for everything and it's come back negative

> > (HIDS, TRAPS, cyclic neutropenia). I'm not convinced that Shane

> has

> > JRA and I'm not sure he has . SOOOOOOO hard to diagnosed.

> > However, the Naproxen is working!!

> >

> > I'm wondering if you can have a genetic disease like TRAPS,

HIDS,

> or

> > where Naproxen works. Or is it only for disease like

JRA.

> I

> > only know that it's working for Shane as an anti-inflammatory

> agent

> > and I don't know how long he should be on this drug.

> >

> > Any info would be truly helpful. Fran any ideas?

> >

> > Thanks and I hope all of us one day will find answers for our

> little

> > ones!!

> >

> > Beverly Dettis

> > Roseville, CA

> > Mom to Shane (8 w//JRA?), Nick, 10 and Madalyn, 5

>

>

>

>

>

>

>

>

[Guest guest]

Hello Bev

Great to hear from you.

No specific research that I know of has been done SPECIFICALLY with

Naproxen... but it is a NSAID like Motrin with longer action so given less.

If it works it is great.

As for correlation directly with the genetic disorders, again I am unaware

of research however I am sure it will work for any inflammatory disorder in

some way... better in some than others. Even in arthritis which Naproxen was

formulated for, it seems that some NSAIDs work better than others. As an

orthopedic nurse I remember having to switch people from one medication to

another until we hit that perfect medication for that specific person.

It is wonderful that you are seeing Dr Kastner next month. There are 3 or 4

people heading to NIH early Sept who are participating in Charyn's TRAPs

group. Maybe you will get to meet up with some other members!

God Bless

and fill us in on your trip to NIH

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Hi Beverly,

I'm so sorry your little boy suffers so much. It does seem to be

beyond the normal symptoms. Will he be tested specifically for

JRA now?

Very interesting (and great news!) about the success of the Naproxen.

There was an article published about a year ago about a child with

HIDs who was treated with a large dose of Naproxen (rather than

prednisone) and it suppressed the attacks entirely. I brought the

article to our Ped. and we tried it twice on my eldest daughter, both

the large dose and just regular doses of it hoping for some relief.

It did absolutely nothing to relieve her symptoms.

BUT, I do believe that there is something to it working on these

fevers. Like all other meds tried on fever patients, every patient

seems to react very differently to each med.

Have you been to NIH or has your doctor contacted Dr. Kastner? Best of

luck on finding a diagnosis.

Wilke

Mom to HIDs kids Hana 4 and Georgia 2

Vancouver BC

There was another family who used it besides ours and they seemed to

have much more success with it. I

> Hi Fran and Families,

>

> Shane, my 8 year old son was diagnosed with when he was a

> toddler. Over the years, his symptoms have changed. When he gets his

> fevers, aches, pains, vomiting, etc. it is very severe (and I thought

> it was bad when he was little!!!) It seems that as he as gotten older

> his symptoms have gotten worse. Without the prednisone to knock the

> fever out, Shane suffers immensely. Motrin and Tylenol doesn't

> really work anymore for him. His body is under so much stress from

> the fevers and pain that twice he has been diagnosed with having heart

> murmurs due to the fevers. I always get it checked when he is not

> fevering and the doctors say it is no longer present.

>

>

> Last year he started getting rashes periodically (not while he was

> fevering, but always after given Prednisone). I was told he is not

> allegic to the pred. We've had his rash biopsied and we were told

> it's a very common histime (sp?) rash. Another new symptom that

> started last December/January was that his body hurt ALL the time.

> Leg pain, had trouble walking, stomach pain, eye pain (stabbing

> feeling, and at times, sensitivity to light).

>

> I went to Shane's rhummy doc at UCSF and addressed changes and she

> still said she thought he had . I wasn't convinced and I wanted

> a second opinion. I then went to Stanford and was told that he may

> have JRA. He was given Naproxen last March (250 mg. twice a day) and

> all of his symptions have disappeared, including the fevers.

>

> We are scheduled to see Dr. Kastner next month Sept. 20th and I plan

> on asking him this question. However, I am wondering if anyone else

> is taking Naproxen. It has been a God send. Like so many like you,

> Shane has been tested for everything and it's come back negative

> (HIDS, TRAPS, cyclic neutropenia). I'm not convinced that Shane has

> JRA and I'm not sure he has . SOOOOOOO hard to diagnosed.

> However, the Naproxen is working!!

>

> I'm wondering if you can have a genetic disease like TRAPS, HIDS, or

> where Naproxen works. Or is it only for disease like JRA. I

> only know that it's working for Shane as an anti-inflammatory agent

> and I don't know how long he should be on this drug.

>

> Any info would be truly helpful. Fran any ideas?

>

> Thanks and I hope all of us one day will find answers for our little

> ones!!

>

> Beverly Dettis

> Roseville, CA

> Mom to Shane (8 w//JRA?), Nick, 10 and Madalyn, 5

[Guest guest]

The liver processes many types of medications, so as soon as hepatitis

is diagnosed, the patient should stop taking all drugs, including over-

the-counter medications, except those a physician specifically

prescribes or recommends. Of special note, ibuprofen (Advil, Motrin)

apparently increases liver enzymes in hepatitis C patients and

therefore should be avoided. Ibuprofen is one the common pain killers

known as a nonsteroidal anti-inflammatory drugs (NSAIDs). Other NSAIDs

include aspirin and naproxen. The usual alternative to an NSAID is

acetaminophen (Tylenol). It should be noted that acetaminophen also

can be toxic in the liver, particularly when drinking alcohol.

According to my gastro Tylenol should be taken according to direction

but extra strength is too much. Aspirin products and naproxen should

never be taken.

Donna Gail

[Guest guest]

I have taken Naproxen for years---and my Hep C doc says its OK---I onlly take it

at most 1 time a month and when I do its with a sleeping pill and with perfect

sleeping posture--the muscles relax with the posture and wiht the mental

relaxation I know. THis always happens when I have weight lifted too much thien

got stressed out at work and or drove the car too much, etc.

Now , i take 10mg ? I think, of testestoterone---I am older and my hep C doc

gave it to me--steroids are bad on the liver right ? He says this amount,

topical, is OK for me---each person would vary though. But the steroid is great

as it does great for the depression--in fact I got rid of that Lexapro shit---it

helps with the muscles building and dont need the neproxin either. I am

OLD--45, so my natural testi level is down anyway---but like the diet, each

perosn has to kinda figure these things out.

Donna <donnagail1956@...> wrote: The

liver processes many types of medications, so as soon as hepatitis

is diagnosed, the patient should stop taking all drugs, including over-

the-counter medications, except those a physician specifically

prescribes or recommends. Of special note, ibuprofen (Advil, Motrin)

apparently increases liver enzymes in hepatitis C patients and

therefore should be avoided. Ibuprofen is one the common pain killers

known as a nonsteroidal anti-inflammatory drugs (NSAIDs). Other NSAIDs

include aspirin and naproxen. The usual alternative to an NSAID is

acetaminophen (Tylenol). It should be noted that acetaminophen also

can be toxic in the liver, particularly when drinking alcohol.

According to my gastro Tylenol should be taken according to direction

but extra strength is too much. Aspirin products and naproxen should

never be taken.

Donna Gail

__________________________________________________

[Guest guest]

my daughter isnt officially diagnosed. im assuming a diagnosis can take a

while??? however with her knee and foot symptoms the rheumy wants her to take

naproxen once daily. im nervous as she has several GI problems and has a

sensitive tummy with a g tube. does this med cause some GI problems? what has

your experience been? my daughter Sophie is 6.

[Guest guest]

Naproxen was given to my son before he was diagnosed almost two years ago...it

was at his first rheumy appointment. It was very hard on his stomach and once

we started MTX and Enbrel and saw great improvement...it was the first med to

go. The doctor feels he had a small belly bleed from it...

All the best.

& , 7, poly...SPD...nystagmus...

Sent from my iPhone

________________________________________________________________________________\

____

The fish are biting.

Get more visitors on your site using Search Marketing.

http://searchmarketing./arp/sponsoredsearch_v2.php

[Guest guest]

Lexi has been on Naproxen for 9 1/2 months. When the orthopedic doc first

suspected JA he started her on it. We've since added prednisone and MTX but

something was seriously bothering her stomach so we added zantac. Her case is a

mess though and I'm hoping to get some answers when we see her new rheumy on

Tuesday. She has alot of bruising on her arms, legs, etc. - anywhere she gets

bumped even the slightest. Praying you get some answers soon too.

, Rotweiler for is, 5, psoriatic vs. pauci

>

> my daughter isnt officially diagnosed. im assuming a diagnosis can take a

while??? however with her knee and foot symptoms the rheumy wants her to take

naproxen once daily. im nervous as she has several GI problems and has a

sensitive tummy with a g tube. does this med cause some GI problems? what has

your experience been? my daughter Sophie is 6.

>

[Guest guest]

When Audrey was on naproxen she bruised easy too. It s a side effect of the

naproxen.

Mom to Audrey fighting this battle for almost 7 years now.

Sent via DROID on Verizon Wireless

Re: naproxen

Lexi has been on Naproxen for 9 1/2 months. When the orthopedic doc first

suspected JA he started her on it. We've since added prednisone and MTX but

something was seriously bothering her stomach so we added zantac. Her case

is a mess though and I'm hoping to get some answers when we see her new

rheumy on Tuesday. She has alot of bruising on her arms, legs, etc. -

anywhere she gets bumped even the slightest. Praying you get some answers

soon too.

, Rotweiler for is, 5, psoriatic vs. pauci

>

> my daughter isnt officially diagnosed. im assuming a diagnosis can take a

while??? however with her knee and foot symptoms the rheumy wants her to

take naproxen once daily. im nervous as she has several GI problems and has

a sensitive tummy with a g tube. does this med cause some GI problems? what

has your experience been? my daughter Sophie is 6.

>