SYSTEMIC JRA: KINERET still working!

[Guest guest]

Hello JRA GROUP:

I haven't posted in years....I feel bad that I haven't kept up with the list.

Many of the systemic families> I remember you all well.

Just an update: Westfall (systemic onset age 1) is now 10 years old. He

was in the moderate-severe systemic catagory when he was initally diagnosed. He

is treated at TEXAS SCOTTISH RITE in Dallas, Texas. He was first placed on MTX

and did many, many, many PULSE IV STEROIDS to controll his symptoms the first 3

1/2 years. By age 4, ish Rite enrolled him in a Kineret study. 9 out of

10 children reponded to the drug miraculously. fortunately was one of

them. He has been very WELL controlled on the Kineret. Today at ish Rite

if you are newly diagnosed with Systemic JRA> Kineret is used as a first line

therapy. If anyone would like to contact me regarding our use over the last 6

years with Kineret....please email me directly at mwestfall " at " austin.rr.com.

I would be happy to tell you about our experience. I know that Kineret doesn't

work for all children> But scottish rite has had very good results.

Sincerely,

Marguerite and Westfall

P.S. EMLA cream with a Tegaderm an hour before injection eliminates the burning

sensation with the injection....works like a charm!

> > >

> > > > Hello, I wanted to introduce myself after months of lurking

> > here. I

> > > > apologize for the long post but I have a hard time summing up the

> > > > situation in a few sentences ...

> > > >

> > > > My daughter , age 9, is newly diagnosed (6 months yesterday)

> > > > with Systemic JIA/Still's. The onset was severe, with three

> > > > hospitalizations - two as a result of pericarditis and one for a

> > > > bacterial infection. Her blood counts went awry several times,

> > > > including liver counts through the roof and plummeting white cells

> > > > from time to time. The doctors were on the lookout for MAS but the

> > > > blood counts then resolved on their own without additional

> > > > medication so they said it wasn't MAS but a " bone marrow recovery

> > > > process " . was also blood test screened for leukemia and

> > > > lymphoma at this time but she did not have a bone marrow draw

> > > > because the counts rebounded. Actually the diagnosis of Systemic

> > > > JIA came very quickly when she presented with the " classic "

> > > > symptoms upon arrival at the children's hospital - high WBCs, high

> > > > inflammation markers, slightly elevated liver ezemyes,

> > > > pericarditis, all over joint pain, several fever spikes a day to

> > > > 105. The IV prednisolone brought her under control in the hospital

> > > > and then she was sent home on oral prednisone starting at 60mg per

> > > > day. She has been on various NSAIDS - Indocin initially but it

> > > > caused liver issues, then Aleve but it caused blood count issues,

> > > > now she is on Ibuprofen daily. And, she is down to only 5mg of

> > oral

> > > > prednisone which is the fastest taper our Rheumy has ever done.

> > > >

> > > > My question to you is: how do we as a family move forward and live

> > > > day to day with this disease?? My husband and I also have a 5 year

> > > > old daughter. It has been such a scary time for everyone. is

> > > > doing so well now - she's back to school and even playing soccer

> > > > again! We are " holding " at 5mg prednisone and the ibuprofen, as

> > > > well as several supplements like Omega3, probiotics, and enzeymes

> > > > but she still has the haunting JIA rash that comes and goes almost

> > > > every day, mostly in a mild form, sometimes moderate when she also

> > > > has minor joint aches and pains. She hasn't had too many fevers

> > > > lately, except a day or two as we've lowered the prednisone - her

> > > > body seems to have adjusted to each lowered dose thus far. Once in

> > > > a while she will have a low grade fever for a few hours or an

> > > > occasional 102 during the night - these seem to correlate with her

> > > > " overdoing it " a bit during the day.

> > > >

> > > > Overall she is doing very, very well, but it's clear the disease

> > > > process is still going on and it freaks me out. It's like this

> > > > smoldering fire and we live in fear of it blazing up again. I am

> > > > grateful that we haven't had to add other medications, especially

> > > > given 's past liver issues. But it's like we are sitting

> > > > around waiting for what's going happen. It's difficult to know if

> > > > we should plan summer vacations, for instance. Should we take her

> > > > on a plane? Should we drive out of range of a children's hospital?

> > > > Should we cancel all plans and stay close to home - and if so for

> > > > how long, months? years? I know this could go many different

> > > > directions from here and I know the truth is we just need to live

> > > > day to day. Any advice on how to do that would be just great ...

> > > > thanks much!

> > > >

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