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nomidsyndrome · N.O.M.I.D/C.I.N.C.A. Syndrome
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NOMID hives - frequency   Message List  
Reply | Forward Message #2182 of 2363 |
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





Mon Apr 6, 2009 8:57 am

daniela.spalt
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Message #2182 of 2363 |
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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...
daniela.spalt
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Apr 6, 2009
8:57 am

Dear Daniela, I am so glad to hear that a higher and morefrequent dose is helping your son to have less suffering on a daily basis. It sounds like he is still...
sfokaren2003
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Apr 6, 2009
6:12 pm

Hi Daniela, Sorry Jan is still getting sick. Actually I have wanted to sound in too as my son has had some recent issues. We may be dealing with an allergic...
Michele Griffin
mmkcgriffin
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Apr 6, 2009
10:14 pm
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