Re: Its back ? about Plaquenil

[Guest guest]

, n was on plaquenil for five years. She flared every year she

was on it. She is now on enbrel and she is flaring with it too. I think

these drugs sometimes get things under control, but when it decides to rear

its ugly head, nothing stops the disease from coming to the surface. When

n flares we usually have to add steroids, and then we may or may not

make additional changes to her dmard's. (n, 15, systemic)

Its back ? about Plaquenil

>

>

> Aundrea seems to be starting another flare. She hasn't had any major

> problems since July. She started with the sorethroat last night and

> then woke up with the swollen glands and achey knees. Low grade

> fever this morning.

>

> I was wondering if anyone has had experience with Plaquenil. She has

> been on it for 8 months. Does it loose its effectiveness after

> awhile?

>

> I hope this will be a short-lived flare but she is looking pretty

> rough at this point.

>

> God Bless,

> (Aundrea age 9 systemic)

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

What made them decide to take her off of the Plaquenil? Is she

dealing with any side effects from the enbrel? Do you think the

change in drugs have offered her any benefit?

Aundrea has just gone past her first year mark with Jra so its to

early yet to know what type of pattern she will have, if any? She

did great thru spring and summer. I remember you saying that n

has a harder time in the winter. Is that still the case for her.

I read in some previous posts of yours that n was having a

really hard time with her wrists. Is that getting any better?

(Aundrea age 9 systemic)

, " WILLIAM PRICE " <bc.price@c...> wrote:

> , n was on plaquenil for five years. She flared every

year she

> was on it. She is now on enbrel and she is flaring with it too. I

think

> these drugs sometimes get things under control, but when it decides

to rear

> its ugly head, nothing stops the disease from coming to the

surface. When

> n flares we usually have to add steroids, and then we may or

may not

> make additional changes to her dmard's. (n, 15, systemic)

> Its back ? about Plaquenil

>

>

> >

> >

> > Aundrea seems to be starting another flare. She hasn't had any

major

> > problems since July. She started with the sorethroat last night

and

> > then woke up with the swollen glands and achey knees. Low grade

> > fever this morning.

> >

> > I was wondering if anyone has had experience with Plaquenil. She

has

> > been on it for 8 months. Does it loose its effectiveness after

> > awhile?

> >

> > I hope this will be a short-lived flare but she is looking pretty

> > rough at this point.

> >

> > God Bless,

> > (Aundrea age 9 systemic)

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

---

Hi Helen,

I hope it leaves quickly also, but you know how everything just feels

so familiar when you return to the whole flare thing. We now have

the walkie talkies out so that she can call me when she needs help.

she is having trouble walking. I guess the one thing I am learning

about Aundrea is that when she is feeling well everything is perfect

but once a flare comes on it just really takes her down fast.

I will keep you posted on how we do. Did you get the info that you

were looking for on lab values. Did get to go to school

today? Have the fevers been staying away at night?

(Aundrea age 9 systemic)

In , " hburger64 " <hburger64@h...> wrote:

>

> -...

>

> Im sorry Aundrea is not feeling well, hopefully its just a bug and

> will soon pass.

>

> let us know how she does...

>

> Hugs Helen and (7,systemic)

>

> -- In , " sonia1md " <sonia1md@y...> wrote:

> >

> > Aundrea seems to be starting another flare. She hasn't had any

> major

> > problems since July. She started with the sorethroat last night

> and

> > then woke up with the swollen glands and achey knees. Low grade

> > fever this morning.

> >

> > I was wondering if anyone has had experience with Plaquenil. She

> has

> > been on it for 8 months. Does it loose its effectiveness after

> > awhile?

> >

> > I hope this will be a short-lived flare but she is looking pretty

> > rough at this point.

> >

> > God Bless,

> > (Aundrea age 9 systemic)

[Guest guest]

We changed doctors in August and I mentioned to him about the conversations

at the National AJAO conference about Plaquenil. You might remember that

the chair at San Diego Children's Hospital was adamant that kids with

systemic shouldn't take plaquenil. Our rheumy said that he had never ever

heard of anything like that. He seems to be very well read, and trained at

the best(Cincy Chilren's Hosp), and we really trust him. He said that since

n seems to flare every year anyway, he doubted that it was doing much

for her, and said we could take her off of it. As for the enbrel, we see

absolutely no side effects. About two weeks after she went on it, her

bloodwork came back completely normal after being out of wrack for awhile.

Her rash completely disappeared on it. She didn' t go in remission but she

was doing well. Her wrist had frozen to the side over the summer and she

got those injected in early Sept. At yesterday's appointment he said they

were still doing great. Good range of motion.

n caught a bad cold from me two weeks ago, and it just won't get any

better. The doctor said that if she doesn't have a fever to keep giving her

the enbrel, but it will take her longer to get over the cold on the enbrel.

This is the first time she has ever had such a problem with a cold. The

cold has put her into a flare. He left it up to us if we want to start

prednisone. He also gave us recommendations on dosing, but left it up

somewhat to us. n has been on and off prednisone for five years, so we

know the art involved in getting her off. n is almost 16 and he wants

her to participate in the decisions, for in two years she will probably be

on her own at college with the new privacy laws. n didn't want to

start the steroids this morning, she wants to wait another day or two to see

how the cold is. When this whole episode is over, we may try mtx again or

he mentioned imuran. (n, 15, systemic)

Its back ? about Plaquenil

> >

> >

> > >

> > >

> > > Aundrea seems to be starting another flare. She hasn't had any

> major

> > > problems since July. She started with the sorethroat last night

> and

> > > then woke up with the swollen glands and achey knees. Low grade

> > > fever this morning.

> > >

> > > I was wondering if anyone has had experience with Plaquenil. She

> has

> > > been on it for 8 months. Does it loose its effectiveness after

> > > awhile?

> > >

> > > I hope this will be a short-lived flare but she is looking pretty

> > > rough at this point.

> > >

> > > God Bless,

> > > (Aundrea age 9 systemic)

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

--..

Sorry that Aundrea is having soo much trouble..You are right, when

this hits these kids, it hits like a ton of bricks. Thats one thing

that always amazed me about the systemic fevers. Nick can he fine

one minute and then you can actually watch him decline right in

front of your eyes. He can go from a normal temp to 104+ in next to

no time. It scares me.

We have been fever and hive free for 2 days now. Hes back in school,

hes very tired and pale but hes making it.

The ped called this morning to day that he does, in fact, have a

sinus infection. He will be starting 14 days of cefzil this

afternoon.

So im now wondering... was it a sinus infection all along, or a

systemic flare AND the sinus. On thursday night last week, every

joint in his body hurt. I couldnt touch him, no one was allowed near

him. It was really scary. His temps were also " classic " systemic in

their timing.

His rhuemy will be calling me later today and ill talk to her more.

Nick is also still battling the canker sores, even on 2mg of folic

acid a day.

have you called the rhuemy about Aundrea??

Hugs Helen, whos off to a spa for the afternoon for " the ultimate

facial "

- In , " sonia1md " <sonia1md@y...> wrote:

>

> ---

> Hi Helen,

>

> I hope it leaves quickly also, but you know how everything just

feels

> so familiar when you return to the whole flare thing. We now have

> the walkie talkies out so that she can call me when she needs

help.

> she is having trouble walking. I guess the one thing I am

learning

> about Aundrea is that when she is feeling well everything is

perfect

> but once a flare comes on it just really takes her down fast.

>

> I will keep you posted on how we do. Did you get the info that

you

> were looking for on lab values. Did get to go to school

> today? Have the fevers been staying away at night?

>

> (Aundrea age 9 systemic)

>

> In , " hburger64 " <hburger64@h...> wrote:

> >

> > -...

> >

> > Im sorry Aundrea is not feeling well, hopefully its just a bug

and

> > will soon pass.

> >

> > let us know how she does...

> >

> > Hugs Helen and (7,systemic)

> >

> > -- In , " sonia1md " <sonia1md@y...> wrote:

> > >

> > > Aundrea seems to be starting another flare. She hasn't had

any

> > major

> > > problems since July. She started with the sorethroat last

night

> > and

> > > then woke up with the swollen glands and achey knees. Low

grade

> > > fever this morning.

> > >

> > > I was wondering if anyone has had experience with Plaquenil.

She

> > has

> > > been on it for 8 months. Does it loose its effectiveness

after

> > > awhile?

> > >

> > > I hope this will be a short-lived flare but she is looking

pretty

> > > rough at this point.

> > >

> > > God Bless,

> > > (Aundrea age 9 systemic)

[Guest guest]

Hey Helen, I pretty much posted everything to . Her cold is a bit

better, but she is still pretty fatigued. You know how that goes along with

the systemic. She is going to bed around 6. Now we just have decisions,

decisions. The medication can get a bit tougher as they get older and want

a say in things. The doctor says he believes in a democratic decision, but

I don't think my husband does. See ya . and n

Its back ? about Plaquenil

> >

> >

> > >

> > >

> > > Aundrea seems to be starting another flare. She hasn't had any

> major

> > > problems since July. She started with the sorethroat last night

> and

> > > then woke up with the swollen glands and achey knees. Low grade

> > > fever this morning.

> > >

> > > I was wondering if anyone has had experience with Plaquenil.

> She has

> > > been on it for 8 months. Does it loose its effectiveness after

> > > awhile?

> > >

> > > I hope this will be a short-lived flare but she is looking pretty

> > > rough at this point.

> > >

> > > God Bless,

> > > (Aundrea age 9 systemic)

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

,

I wasn't staying current with the posts over the summer due to trying

to get our house ready to sell. I did see some comments about the

Plaquenil but I never was able find out what the discussion was about

Plaquenil at the conference. Do you know where I might find that

information. I wonder if they were against plaquenil for all jra kids

or just systemics? I read that long-term use of plaquenil isn't

adviseable for children but our rheumy seems to have no concerns

about it.

I am glad that n is doing well with the enbrel. I hope she can

get over the cold and that she can avoid the steroids. Do you like

your new rheumy? Its good that the new doc is keeping n

involved with the decisions. I know that was challenging for my mom

when my sister became 18 and was suddenly responsible for managing

her chrones disease, taking her meds, keeping appointments etc...She

is 27 now and mom is still the first person she calls for advice or

if she is in need of some nursing care, but she has also learned to

be responsible and to manage her disease as best as she is able.

Thanks for the info and I hope that n is feeling much better

soon.

(Aundrea 9 systemic)

-- In , " WILLIAM PRICE " <bc.price@c...> wrote:

> We changed doctors in August and I mentioned to him about the

conversations

> at the National AJAO conference about Plaquenil. You might

remember that

> the chair at San Diego Children's Hospital was adamant that kids

with

> systemic shouldn't take plaquenil. Our rheumy said that he had

never ever

> heard of anything like that. He seems to be very well read, and

trained at

> the best(Cincy Chilren's Hosp), and we really trust him. He said

that since

> n seems to flare every year anyway, he doubted that it was

doing much

> for her, and said we could take her off of it. As for the enbrel,

we see

> absolutely no side effects. About two weeks after she went on it,

her

> bloodwork came back completely normal after being out of wrack for

awhile.

> Her rash completely disappeared on it. She didn' t go in remission

but she

> was doing well. Her wrist had frozen to the side over the summer

and she

> got those injected in early Sept. At yesterday's appointment he

said they

> were still doing great. Good range of motion.

> n caught a bad cold from me two weeks ago, and it just won't

get any

> better. The doctor said that if she doesn't have a fever to keep

giving her

> the enbrel, but it will take her longer to get over the cold on the

enbrel.

> This is the first time she has ever had such a problem with a

cold. The

> cold has put her into a flare. He left it up to us if we want to

start

> prednisone. He also gave us recommendations on dosing, but left it

up

> somewhat to us. n has been on and off prednisone for five

years, so we

> know the art involved in getting her off. n is almost 16 and

he wants

> her to participate in the decisions, for in two years she will

probably be

> on her own at college with the new privacy laws. n didn't

want to

> start the steroids this morning, she wants to wait another day or

two to see

> how the cold is. When this whole episode is over, we may try mtx

again or

> he mentioned imuran. (n, 15, systemic)

> Its back ? about Plaquenil

> > >

> > >

> > > >

> > > >

> > > > Aundrea seems to be starting another flare. She hasn't had

any

> > major

> > > > problems since July. She started with the sorethroat last

night

> > and

> > > > then woke up with the swollen glands and achey knees. Low

grade

> > > > fever this morning.

> > > >

> > > > I was wondering if anyone has had experience with Plaquenil.

She

> > has

> > > > been on it for 8 months. Does it loose its effectiveness

after

> > > > awhile?

> > > >

> > > > I hope this will be a short-lived flare but she is looking

pretty

> > > > rough at this point.

> > > >

> > > > God Bless,

> > > > (Aundrea age 9 systemic)

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

> > > >

> > > > Aundrea seems to be starting another flare. She hasn't had

> any

> > > major

> > > > problems since July. She started with the sorethroat last

> night

> > > and

> > > > then woke up with the swollen glands and achey knees. Low

> grade

> > > > fever this morning.

> > > >

> > > > I was wondering if anyone has had experience with Plaquenil.

> She

> > > has

> > > > been on it for 8 months. Does it loose its effectiveness

> after

> > > > awhile?

> > > >

> > > > I hope this will be a short-lived flare but she is looking

> pretty

> > > > rough at this point.

> > > >

> > > > God Bless,

> > > > (Aundrea age 9 systemic)

[Guest guest]

, I didn't keep the posts, but the ped rheumy from San Diego

Children's Hospital was adamant that systemic kids should never be on

plaquenil. Well, several kids here are on it, so Stacia sent us the info.

Like I said, we asked our rheumy and he didn't seem concerned about

plaquenil and systemic kids. He even said that he thought that doctor must

have been thinking about another medication. I doubt that she was, for I

understand that she was quite animated about it at the conference and even

chided some parents who dared give their kids plaquenil. Maybe Stacia will

chime in. (n, systemic,15)

Its back ? about Plaquenil

> > > >

> > > >

> > > > >

> > > > >

> > > > > Aundrea seems to be starting another flare. She hasn't had

> any

> > > major

> > > > > problems since July. She started with the sorethroat last

> night

> > > and

> > > > > then woke up with the swollen glands and achey knees. Low

> grade

> > > > > fever this morning.

> > > > >

> > > > > I was wondering if anyone has had experience with Plaquenil.

> She

> > > has

> > > > > been on it for 8 months. Does it loose its effectiveness

> after

> > > > > awhile?

> > > > >

> > > > > I hope this will be a short-lived flare but she is looking

> pretty

> > > > > rough at this point.

> > > > >

> > > > > God Bless,

> > > > > (Aundrea age 9 systemic)

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

-..

If you search the archives on the webpage you should be able to find

the posts about it.....They would have been from the week after

everyone got back... so the end of July, beginning of August.

Hope you find them...

Hugs Helen and (7,systemic)

-- In , " WILLIAM PRICE " <bc.price@c...>

wrote:

> , I didn't keep the posts, but the ped rheumy from San Diego

> Children's Hospital was adamant that systemic kids should never be

on

> plaquenil. Well, several kids here are on it, so Stacia sent us

the info.

> Like I said, we asked our rheumy and he didn't seem concerned about

> plaquenil and systemic kids. He even said that he thought that

doctor must

> have been thinking about another medication. I doubt that she

was, for I

> understand that she was quite animated about it at the conference

and even

> chided some parents who dared give their kids plaquenil. Maybe

Stacia will

> chime in. (n, systemic,15)

> Its back ? about Plaquenil

> > > > >

> > > > >

> > > > > >

> > > > > >

> > > > > > Aundrea seems to be starting another flare. She hasn't

had

> > any

> > > > major

> > > > > > problems since July. She started with the sorethroat

last

> > night

> > > > and

> > > > > > then woke up with the swollen glands and achey knees.

Low

> > grade

> > > > > > fever this morning.

> > > > > >

> > > > > > I was wondering if anyone has had experience with

Plaquenil.

> > She

> > > > has

> > > > > > been on it for 8 months. Does it loose its effectiveness

> > after

> > > > > > awhile?

> > > > > >

> > > > > > I hope this will be a short-lived flare but she is

looking

> > pretty

> > > > > > rough at this point.

> > > > > >

> > > > > > God Bless,

> > > > > > (Aundrea age 9 systemic)

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >