Re: Re:more cimetidine questions.

September 30, 2004

also when i put in TRAPS fever disorders it comes up with lots of options

,

Please guide me to the " sites " where you are reading this information. There

is little information I have found on the web... and we have two members

here who have children with TRAPs. I assisted one of the Mom's with

developing the TRAPs site.... through .... and found the other Mom

through a FMF support site... Neither of these Mom's are having an easy time

getting info on TRAPs other than what Charyn and I have received from Dr

Kastner at NIH... Charyn decided to create the TRAPs group because of the

difficulty she was having getting personal opinions regarding drugs like

Enbrel, used to treat TRAPS and other disorders....

This is a wonderful networking situation for these Moms.... so please share

the sites and I will upload them to our site for any new people who are

still in the diagnostic phase...

God Bless

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

thanks Fran

in researching TRAPS that they are now thinking kiara has.. it says on

some of the sites that motrin will not reduce.

Kiara can not take motrin as it leaves scarring in her cheeks like an

NSAID can.. most commonly naprosyn.. but this can too

October 1, 2004

The symptoms the article promoting the newer drug Enbrel is NOT discussing

fever reduction specifically. It is comparing Enbrel, NSAIDs, and Steroids

and their effect on the clinical factors of TRAPS. The discussion is

comparing CRP, ESR or sed rate.... and Clinically, patients present with

recurring inflammatory attacks consisting of fever, rash, conjunctivitis,

abdominal pain, and myalgia that are often severely disabling. Enbrel

assists in decreasing the inflammatory effects which cause the SEVERE

disabling episodes children with TRAPS get. I have had discussions with Dr

Kastner and Dr Hull from NIH regarding Enbrel.... when a child has TRAPS,

Kastner believes Enbrel is worth a try because the effect it has on

relieving the severe joint pain, and abdominal pain and myalgia.... If a

child does NOT have ALL of these symptoms and a parent is looking for fever

reduction, simple NSAIDs ARE the choice. I will copy the article for those

who would like to read more about Enbrel. Enbrel is NOT being used for

. The drug is injectable medication and requires CLOSE monitoring. We

have a few children who are waiting to start Enbrel... for TRAPs of for

TRAPs LIKE symptoms....

Maybe our Mom's on the list who are planning to place their child on Enbrel

and who have had lengthy discussions with Kastner or Hull or another

experienced doc... can comment here.

Enbrel dose-dependently decreased the baseline CRP (49 percent and 76

percent, respectively), ESR (23 percent and 47 percent, respectively), the

amount of NSAIDs (61 percent and 87 percent, respectively) and

glucocorticoids (80 percent and 85 percent, respectively) taken to relieve

symptoms. The only reported adverse effect was that of minor local injection

site irritation.

hereis the one site..

it talks about NSAIDS which is what advil falls under

http://www.pslgroup.com/dg/20DA2A.htm

October 1, 2004