podiatrist

[Guest guest]

Hi, Just wanted to ask again in anyone had used Enbrel for your child. My

daughter will begin this sometime next week. I would like to find someone

who had used this drug to see how it worked for your child. Hope to hear

from someone soon. Thanks.

Deanna

[Guest guest]

Hi Deanna,

I don't think that any of the children represented here have tried this new

drug, yet. I do know of a few adults who are beginning Enbrel treatments,

though. I've been doing some reading about it in the arthritis newsgroup but

even over there, it seems to be being used only by adults. Most seem to have a

really good response to the medicine. A few mention irritation and/or

itchiness at the site of injection. A few mentioned getting a slight upper

respiratory infection after using it for about a month. Most importantly, many

report that they have a major relief of their symptoms! Here is an article I

found and posted to the mailing list on Feb 4th. Maybe it will help answer

some of your questions? I hope so :-)

~Georgina

I found the following article in this weeks issue of the ArthritisNet News and

figured I'd post it to the mailing list. It gives us some information about

the use of Enbrel in children with JRA. Below it, I've cut and pasted the info

from their web site. Please note the fact that

the 69 children in the study had been diagnosed with polyarticular JRA and not

the systemic type. Think this makes a difference?

--------------------------------------------------------------------------------\

-----------

Regarding JRA, Immunex conducted one of the first studies of a innovative

biologic product in children ever with ENBREL in JRA. The positive results of

this study are discussed in our current packager insert and on the

www.immunex.com web-site. This study is complete, and has been filed with the

FDA in hopes that it will provide a basis for approval of ENBREL to treat

children and teenagers with this disease. By mid-year 1999, we hope to have

completed all the necessary meetings and reviews of ENBREL in JRA

necessary to earn this expanded label for ENBREL.

Pediatric Use

In the open-label part of a two-part trial, 69 patients with polyarticular

course JRA ages 4 to 17 years, who were refractory to or intolerant of

methotrexate and had moderately to severely active JRA, were administered

0.4 mg/kg (maximum 25 mg dose) of ENBREL SC

twice weekly for 3 months. Of 54 patients for whom 3-month treatment data

were available, 76% demonstrated a clinical response measured by the JRA

Definition of Improvement.

The JRA Definition of Improvement is defined as 30% improvement in at least

three of six and 30% worsening in no more than one of six JRA core set

criteria, which include physician and patient global assessments, active joint

count, limitation of motion, functional assessment, and ESR.

Of 69 JRA patients for whom safety data were available, the safety profile was

similar to that seen in adult RA patients treated with ENBREL. However, the

percent of JRA patients

reporting abdominal pain (17%) and vomiting (14.5%) was higher than in adult

RA. While receiving ENBREL, two JRA patients developed varicella infection

associated with signs and symptoms of aseptic meningitis; the infection

resolved without sequelae. It is recommended that patients with a significant

exposure to varicella virus temporarily discontinue ENBREL therapy and

treatment with Varicella Zoster Immune Globulin be considered.

Responses to immunizations have not been studied in children receiving ENBREL.

It is

recommended that JRA patients, if possible, be brought up to date with all

immunizations in

agreement with current immunization guidelines prior to initiating ENBREL

therapy.

The safety of ENBREL has not been studied in children < 4 years of age.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Deanna, here's another link that can provide you with more info on Enbrel,

too.

When you follow the link I'm including, you'll need to click on the Updates

button. From there, you will see the Heading 'Enbrel.' Click on that to locate

the recent article. Good luck.

http://www.aztec.co.za/users/drdoc/index.html

Deanna wrote:

> From: " Deanna " <deanna@...>

>

> Hi, Just wanted to ask again in anyone had used Enbrel for your child. My

> daughter will begin this sometime next week. I would like to find someone

> who had used this drug to see how it worked for your child. Hope to hear

> from someone soon. Thanks.

> Deanna

[Guest guest]

Hi ,

Glad to hear that the physical therapy appt went well. What kind of exercises

did

they suggest? Josh used to do the one where you keep your heel on the floor and

then twist your foot up and in a circular motion. I hope the orthotics help with

your daughter's foot pain. They are supposed to work well. I remember inquiring

about them once, for myself, and was shocked to hear that custom-made orthotics

would cost over $600. In my case, I didn't think that was the solution. In fact,

I

just saw my podiatrist last Friday and may need to have some corrective surgery

done. Not right now, though. Maybe during the summer.

I bet you're both happy that you've had some success with the Emla cream.

Anything

that makes it easier to do the blood tests sounds like a good thing, to me :-)

Hope you have a great weekend!

~Georgina

[Guest guest]

Just a short contribution about pedicures - I too was very embarrased

at first but since I started having them a couple of years ago - I

haven't lost any toenails (the psoriasis under the nails used to mean

that I frequently lost nails which was quite painful) and he seems to

be able to scrape out a lot of the dead skin which minimises the

discomfort.. My nails are also very strong - sometimes I think he

almost needs a chainsaw to cut them but he is a lovely round

Argentinian who just laughs at my malformed toes and nails.

So I agree with Cheri - Just think of it like a trip to the dentist

except it doesn't hurt half as much and the results are almost as

good.

Sue from Aus