Re: Our Naprosyn info from Nate's mom and question on Indocin

[Guest guest]

Hi Dawn,

I'm really behind on posts but just wanted to quickly answer your question

about Indocin. My son Eliot (10, systemic) was put on Indocid (same thing) when

he first developped JRA 2 years ago. This was the second NSAID they tried

after aspirin. His rash went through the roof in a matter of hours. It had been

bad but after the first day of Indocid it was incredible and he also got

very dizzy. Doctors promptly took him off that and we went on to other

drugs...Just wanted to let you know what our experience had been although it is

just

one experience!

Best wishes to you and Nate.

[Guest guest]

Forgot to say who I was.....!!!

Chloe

Eliot's mom (10, systemic)

Hi Dawn,

I'm really behind on posts but just wanted to quickly answer your question

about Indocin. My son Eliot (10, systemic) was put on Indocid (same thing)

when

he first developped JRA 2 years ago. This was the second NSAID they tried

after aspirin. His rash went through the roof in a matter of hours. It had

been

bad but after the first day of Indocid it was incredible and he also got

very dizzy. Doctors promptly took him off that and we went on to other

drugs...Just wanted to let you know what our experience had been although

it is just

one experience!

Best wishes to you and Nate.

[Guest guest]

Dawn,

I know Indomethasin is one of the strongest NSAIDS out there.It can cause all

the other side effects known with NSAIDS .It can also cause headaches which

can be treated with Tylenol.The most disturbing thing is that it's known to

cause inexplicable temper tantrums in small children.

I hope Nate tolerates it well.

Becki and 6 systemic

[Guest guest]

I started taking Indocine back in the 60's( yes I am old ) when it

was first available and continued to take it for twenty years. I

thought because of all the bad press Indocine received for being very

harsh on the stomach that it had been removed from the market.

However, it was the only NSAID I have ever taken that really helped,

but because of the stomach problems I had to stop taking it a very

long time ago. I remember the severe headache it caused when I first

started taking it, and the severe headache I would get if I missed a

dose. One of the best NSAID's IMHO if your stomach can tolerate the

harshness.

> I got a call from our rheumy about Nate's issues right now. I asked

her about the news on Naprosyn. She said their office was sending a

letter to their patients about it. She said the patients involved in

the study were older and taking large doses. Naprosyn has been on the

market for 30 years and used for 30 yrs on kids. She said there were

no long range studies past that - but that they were asking parents

to trust their dr. and not the " news " -she did welcome my questions

and said they had received many calls. They were also in direct

communication with fda and would contact patients if any thing else

came up. I think anyone who is currently taking it and having any

chest pains should call the dr. If your rheumy is as good about being

open to questions as mine -they will welcome your concerns. You never

know!! We parents know our kids best.

>

> I asked her because my Nate has some things we had been watching

with his heart, a pda and upper level of norm. coronary artery. She

said Naprosyn still would not be a problem for him. She said the

study on the older population had problems because- they had patients

with thickening of the vessels and the Naprosyn causes the platelets

to be a little sticky. This in turn caused problems in the already

narrow blood vessels.

>

> A little side note though- Nate is a blue-eyed, blond hair boy and

has had some unusual scarring on his face lately. One day he bumped

his head. The next day, even though he had no bleeding, he had a big

scab. Several days later a scar.The scar is similar to chickpox

scarring. Now every bump or poke causes this same reaction. Rheumy

said- that does it for his naprosyn. He has that unusual skin thing

happening and we are going to try Indocin. Any info on this?? I know

the big name for it is Indomethacin and that it is hard on the tummy.

> -Dawn (Nate systemic 2)

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