Re: Feedback and info on Plaquenil

[Guest guest]

Hi ,

Your son is Christian, right? He must be about 14 now. How is he doing? Well, I

guess if you guys are considering starting a new med, something must be up.

I'm not sure if you were around after the 2004 (I think it was?) AJAO Convention

in CA? There were some posts here about something that one of the speakers, a

doctor, had mentioned there - advising that kids with the systemic type of

arthritis shouldn't take Plaquenil/Hydroxychloroquine. That really piqued my

curiosity ... I remember trying to find some research studies with evidence to

back that up. I couldn't find any. So, despite that controversy, my son has been

continuing to take it. Josh has used it daily for probably 8 years now. Takes

one 200mg pill every day but he started on 100mg. He has never had any negative

side effects from it, that we're aware of. He has the peripheral vision eye test

done annually, but I've read that it's extremely rare to have the associated eye

problems. Let me see if I can find some information for you with better details

than I can provide.

And when you have a chance, please send us an update to let us know how your son

is, okay?

Aloha,

Georgina

Feedback and info on Plaquenil

My son will start this drug soon and I was wondering for those who have

used it, what they thought about it? I know it is another slow acting

drug and the eyes should be monitored while on the drug but was also

curious as to if anyone has found it helpful?

Also, has anyone had positive results with Voltoren?

Thanks

[Guest guest]

,

Aundrea was on plaquenil for a year when she was first diagnosed. It

seemed to help in the beginning but then she flared and it was no

longer giving adequate control of her disease.

She didn't seem to have any side effects other than she developed what

we thought was a sun sensitivity caused by the med...this past summer

she had the same thing while not on plaquenil so not so sure if it was

ever the culprit.

We did take her to the eye dr. every 4 months. Some docs will tell

you yearly check ups but Drea was having other problems so they may

have wanted to see her more often.

I hope its beneficial for your son.

sonia (aundrea 11 systemic jra)

>

> My son will start this drug soon and I was wondering for those who

have

> used it, what they thought about it? I know it is another slow

acting

> drug and the eyes should be monitored while on the drug but was also

> curious as to if anyone has found it helpful?

>

>

> Also, has anyone had positive results with Voltoren?

>

> Thanks

>

>

[Guest guest]

,

n was on plaquenil for 5 years. She was seen by the eye doctor

every 6 months while on plaquenil. Looking back, I don't think

plaquenil really helped n. Isn't hindsight great?

n had no side effects from plaquenil. (n, 17, systemic)

On Aug 26, 2006, at 1:50 PM, sonia1md wrote:

> ,

>

> Aundrea was on plaquenil for a year when she was first diagnosed. It

> seemed to help in the beginning but then she flared and it was no

> longer giving adequate control of her disease.

>

> She didn't seem to have any side effects other than she developed what

> we thought was a sun sensitivity caused by the med...this past summer

> she had the same thing while not on plaquenil so not so sure if it was

> ever the culprit.

>

> We did take her to the eye dr. every 4 months. Some docs will tell

> you yearly check ups but Drea was having other problems so they may

> have wanted to see her more often.

>

> I hope its beneficial for your son.

>

> sonia (aundrea 11 systemic jra)

>

>

> >

> > My son will start this drug soon and I was wondering for those who

> have

> > used it, what they thought about it? I know it is another slow

> acting

> > drug and the eyes should be monitored while on the drug but was also

> > curious as to if anyone has found it helpful?

> >

> >

> > Also, has anyone had positive results with Voltoren?

> >

> > Thanks

> >

> >

>

>

>

[Guest guest]

Hi Georgina,

First of all, thanks for this list....I am one of those who don't

post often, but certainly read the post and appreciate all your hard

work in making this forum possible for so many people who need it.

So, thanks!

Yes, my son is Christian and he is 14 years old, getting ready to

start those special high school years in a couple of weeks! He's

very excited.

On the medical side, (I will try to keep it short!) he has never had

a remission or full relief from his symptoms since onset 2 1/2 years

ago. Although he has improved, he has never gone back to the kid who

played football and certainly never had a period of pain-free.

There was a period when the rheumy felt the arthritis was in check

and not active, although C was still complaining of pain and

fatigue. The rheumy felt is was most likely a conditioning issue, C

disagreed. At that point, I questioned the need for methotrexate if

the arthritis was under control. The rhuemy discontinued the mxt.

It took about 2 months to see swelling begining in the hands,

specifically the fingers. At that point, the rheumy put him back on

mtx. I felt the fingers were getting worse but the rheumy felt the

appearance of enlarged fingers was not inflammation but rather boney

overgrowth from past disease. I disagreed, I felt it was active

disease. I pushed for an xray to be done, and the rheumy allowed

it. The xray results showed significant soft tissue swelling in just

about every finger joint....no boney overgrowth. At that point I

felt it might be benificial to have a second opinion. I got that and

the rheumy felt there was active disease in the fingers, and toes.

We got the second opinion in June, at that time the rheumy felt

enbrel would help but first wanted us to see a hemotologist to clear

C to use enbrel. She felt since certain blood markers have been

consistantly abnormal, including the d-dimer that putting him on

enbrel might put him at an increased risk of MAS. We just went back

to the rheumy the other day, she wants us to get a second opinion

from a hemotologist who specializes in the coagulation cascade since

several of C's markers are not in the normal range. She doesn't want

to start enbrel yet because of the blood abnormalities and wants to

make sure it's a safe treatment for C. So, in the meantime.....she

feels the fingers are worse than what she saw in June, I agree. But,

the treatment plan will be for us to get MRI's with contrast of the

hands, start on plaquenil (after seeing the eye doctor, 200 mg),

start on voltaren, and use prednisone(5mg) as needed to get him

through the tough days.

I appreciate that she is trying to get to the bottom of what's

causing the blood issues and that she doesn't want to put him on

enbrel until she knows it will be safe for him.

I am concerned about him starting HS with hand problems, note taking

will be an issue and although he could use a laptop, I know he won't

want to stand out so he will have to find his way.

Thanks for asking, I am sorry for being so long winded.

>

> Hi ,

>

> Your son is Christian, right? He must be about 14 now. How is he

doing? Well, I guess if you guys are considering starting a new med,

something must be up.

>

> I'm not sure if you were around after the 2004 (I think it was?)

AJAO Convention in CA? There were some posts here about something

that one of the speakers, a doctor, had mentioned there - advising

that kids with the systemic type of arthritis shouldn't take

Plaquenil/Hydroxychloroquine. That really piqued my curiosity ... I

remember trying to find some research studies with evidence to back

that up. I couldn't find any. So, despite that controversy, my son

has been continuing to take it. Josh has used it daily for probably 8

years now. Takes one 200mg pill every day but he started on 100mg. He

has never had any negative side effects from it, that we're aware of.

He has the peripheral vision eye test done annually, but I've read

that it's extremely rare to have the associated eye problems. Let me

see if I can find some information for you with better details than I

can provide.

>

> And when you have a chance, please send us an update to let us know

how your son is, okay?

>

> Aloha,

> Georgina

>

> Feedback and info on Plaquenil

>

>

> My son will start this drug soon and I was wondering for those

who have

> used it, what they thought about it? I know it is another slow

acting

> drug and the eyes should be monitored while on the drug but was

also

> curious as to if anyone has found it helpful?

>

> Also, has anyone had positive results with Voltoren?

>

> Thanks

>

>

>

>

>

>

>

>

[Guest guest]

,

thanks for your reply. I posted a long explanation to Georgina's

reply so I won't bore you by repeating the message. It's good to hear

that you felt his drug was helpful, even if it was only for a year.

Do you remember how long it took to kick in?

Thanks

> >

> > My son will start this drug soon and I was wondering for those

who

> have

> > used it, what they thought about it? I know it is another slow

> acting

> > drug and the eyes should be monitored while on the drug but was

also

> > curious as to if anyone has found it helpful?

> >

> >

> > Also, has anyone had positive results with Voltoren?

> >

> > Thanks

> >

> >

>

[Guest guest]

,

Thanks for your reply. I always find it very interesting how the

same drug can work great for one person, and not for another. There

are so many frustrating aspects of this disease, and that is one of

them!

Thanks for sharing.

> > >

> > > My son will start this drug soon and I was wondering for those

who

> > have

> > > used it, what they thought about it? I know it is another slow

> > acting

> > > drug and the eyes should be monitored while on the drug but was

also

> > > curious as to if anyone has found it helpful?

> > >

> > >

> > > Also, has anyone had positive results with Voltoren?

> > >

> > > Thanks

> > >

> > >

> >

> >

> >

>

>

>

>

[Guest guest]

Does he have a 504 plan? If he is taking notes on a lecture, perhaps he

could use a small tape recorder to record and type notes at a later

date. I did this in high school, not due to arthritis, but other

issues. Also, with a 504 plan, it could be possible to get a copy of

the teachers notes if it is to be notes on written material.

Misty & birthday boy (8 yrs old today! systemic)

> I am concerned about him starting HS with hand problems, note taking

> will be an issue and although he could use a laptop, I know he won't

> want to stand out so he will have to find his way.

[Guest guest]

It seems like it took awhile. Maybe a couple of months before she

really improved. Of course that was summer time which during our

time in Illinois was always her best " season " regarding flares. Its

always hard to know with this disease as to what contributes to

improvement or lack thereof.

Anyway, I saw your post to Georgiana. I also have a 14 year old son

that just started high school 2 weeks ago. He loves it, but I know

what you mean about not wanting to " stand out " at that age. Aundrea

often has issues with her fingers and wrists. The teachers have

offered to give her copies of all the notes so she doesn't have to

write them all out. Maybe this would be an easy option for

Christian?

(Aundrea 11 systemic jra)-

-- In , " knoble_katherine "

<knoble_katherine@...> wrote:

>

> ,

> thanks for your reply. I posted a long explanation to Georgina's

> reply so I won't bore you by repeating the message. It's good to

hear

> that you felt his drug was helpful, even if it was only for a

year.

> Do you remember how long it took to kick in?

> Thanks

>

>

>

> > >

> > > My son will start this drug soon and I was wondering for those

> who

> > have

> > > used it, what they thought about it? I know it is another

slow

> > acting

> > > drug and the eyes should be monitored while on the drug but

was

> also

> > > curious as to if anyone has found it helpful?

> > >

> > >

> > > Also, has anyone had positive results with Voltoren?

> > >

> > > Thanks

> > >

> > >

> >

>

[Guest guest]

Hi ,

I'm om vacation and have hundreds of emails to wade through when I get home

but this one caught my eye. My daughter has poly JRA and Lupus. We added the

Plaquenil in June because it is supposed to be a benefit for Lupus. So far, she

can't say there is any change. She is out of school for the past couple weeks so

things are milder because she is home and " being a bum " . No worries, no cooking,

walking to class etc. so if there is any change it is likely due to that. The

eye doctor said there have been only 12 documented cases of eye problems with

Plaquennil world wide and they were taking huge doses not JRA doses, so in my

opinion the risk of eye problems is very low (she still will go for follow ups

but I'm not too worried about it). Her rheumy said it is a slow med that takes

4-6 months to help. As for the Voltaren, it did nothing for her. It is not a bad

drug, just didn't work. She takes Celebrex and it has been the best. When her

old rheumy wouldn't prescribe it anymore

because of heart concerns (she is fine, but in the news) I got it through uh,

'other means', and I would do it again because it has some benefit. Hope these

help your son.

e, mom to joe 19 poly and lupus (who is now 5 diagnosed years into this

stinking disease-plus 1 undiagnosed) It is anniversary time-ugh!!!!!!!!!!!!

knoble_katherine <knoble_katherine@...> wrote:

My son will start this drug soon and I was wondering for those who

have

used it, what they thought about it? I know it is another slow acting

drug and the eyes should be monitored while on the drug but was also

curious as to if anyone has found it helpful?

Also, has anyone had positive results with Voltoren?

Thanks

---------------------------------

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

,

Georgina's right.We came back from AJAO in an uproar about this nasty Dr. who

was rude,had no personality and outright told the mom of a systemic child

that if they continued to give their systemic daughter Plaquenil she would

die.She went on to say it was a question on the rheumatoligy board exam.She told

Colleen not to mess with the Interluken 6 trials but Caitlin was a candidate for

the stem call bone marrow transplant.MRA was to new and unknown,QUACK.

I kept thinking about Josh and n and the yrs they had been on it.

took it for about 6 months back when he was 4.They just started him on

the max dose of 200mg a day.We noticed no side effects and the optho said the

eye effects went back when they didn't know how to dose it properly.

Never seen any dramatic effect from adding it.I just recall duiring those 6

months was able to get below 9mg pred without a major systemic flare for

the first time in well over a yr.His rheumy called it a desperation drug and

once Enbrel was started it was the first drug to go.

In all honesty I don't even think Plaquenil is considered an immunosupressant

but it is considered a DMARD.

The worst thing about the drug is that it's SLOW.Too slow in my mind.Waiting

6 months to see if a drug is going to work is just too long and precious time

is wasted.

I hope it's just the thing to get Christian back on track.

Becki and 8 systemic

[Guest guest]

,

Thanks for the update on Christian.It sounds like you are on the right track,

especialy with the second opinion.

I am curious as to what the hemotologist says and if you get the ok to start

Enbrel.

It's been alot of years for but he started Enbrel back before the RI

plant opened and there was a prospective patiant waiting list(spent 9 months on

that list).We took him to Cinci to see Dr.Lovell and start the 3yr drug safety

study.He told us had a 50/50 chance of responding due to being

systemic.He turned out to be a poster child for the hospital and has had a PR

interview with a story on their website and begged to come when they were having

their

Children's Miricle Network radiothon to do a live interview.

You didn't mention if Christian has had any fever or rash or other systemic

symptoms.If not,thats great.Enbrel could do the trick.It's not good for active

systemic disease but a child with just arthritis for a while seams to work as

well as with a poly child.

In the mean time I hope the Plaquenil helps.Your story sounds familiar only

with C you need to find out if it's safe,for us,no new people could get it.

Hugs

Becki and 8 systemic