-----Original Message-----
From: nomidsyndrome@yahoogroups.com [mailto:nomidsyndrome@yahoogroups.com] On Behalf Of daniela.spalt
Sent: Monday, April 06, 2009 3:57 AM
To: nomidsyndrome@yahoogroups.com
Subject: [nomidsyndrome] NOMID hives - frequency

Hello to everybody!

I want to give you an update on Jan and ask for your help again:

Jan is on 6 mg Anakinra at the moment. We need to inject him twice. Since then his rash has vanished and he has improved a lot. He started to discover his body and can sleep when he is well.

Unfortunately he still has bad hives. They seem to develop every 10 to 14 days - which is still not satisfying as you can imagine. He is very unwell for one day then (fever, pain, eats and drinks little ...), paracetamol helps him for 2-3 hours.

How often do NOMID - hives occur in your children and how long do they take? Every 10 - 14 days is too frequent, isn`t it?
Could it be that his hives get less when he gets old better?
Do you have an idea about how we could help him better?

I`m grateful for any advice, perhaps you have made the same experience???

All the best to everyone - esp. to the kids ...

Daniela