- Re: about Plaquenil

[Guest guest]

Hi Stacia, Helen and ,

Thanks for all the info on Plaquenil. Its kind of scary to hear such

varying opinions from the so-called experts. Aundrea is getting her

eyes checked every 6 months but I have been told that the chance of

her having vision problems/blindness is highly unlikely.

Our goal was to try and take Aundrea off of the Plaquenil after we

get moved to Arizona. I have kept a journal regarding the number of

flares and/or bad days that she has had and I thought we would try

going drug free and see if the problems stay the same or change.

If the meds help then we will continue with that path but if they

aren't making any noteable change then we would obviously prefer to

have her off of them.

She is feeling a little better today and since its Veterans Day she

has the day off of school.

Its time for me to load up the animals and kids and get out of the

house for awhile. Oh, how I hope that today is the day we get an

offer on the house!

Thanks again for all your input. This list is my greatest resource

and support system to deal with this disease.

God Bless,

(Aundrea age 9 systemic)

- In , " staciar101 " <staciar@c...> wrote:

>

> ,

>

> I have never seen anything in writing about plaquenil and jra kids,

> but I was witness to the rheumy who gave another parent a

> public " verbal beating " (I want to say shallacking, but don't know

> how to spell it) about how no pediatric rheumy who knew anything

> would ever, ever, ever prescribe plaquenil to a systemic child.

She

> said that is the type of knowledge that differentiated the ped.

> rheumys from the rheumys. She topped it off with a statement like

> that was one of the questions on the ped. board exam. Her

> statements went further into saying that plaquenil can cause DIC or

> MAS, potentially deadly occurrences, again, specifically in

> systemics.

>

> That being said, prior to the AJAO Conf., we added plaquenil to the

> 25ml mtx for two weeks in the spring because our rheumy said it can

> help with long term rashes. Well, two weeks later, Hunter broke

out

> in a head to toe rash/fever/joint pain. Needless to say, we

> personally will never go down the plaquenil path again.

>

> Furthermore, our ped. ophth. said that plaquenil can also affect

the

> eyes. His experience was that you needed to be on high doses for

15-

> 20 years before he had seen any adverse affects. (I'm trying to

> remember without digging up notes, but I think that the eye damage

> here was reversable???)

>

> That's the scoop on the conference coverage of plaquenil.

>

> Stacia and Hunter 8 systemic, iritis