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Posted Wednesday, July 29, 2009 1:00 PM


 

Group: Forum Members
Last Login: Wednesday, July 29, 2009 10:18 PM
Posts: 1, Visits: 6
Hello everyone, we are new here. I just wanted to introduce ourselves. My name is Anne, my husband Jason and I have two girls, Gabby is 8 and Feliciana is 3, she was diagnosed with JRA Poly in March 08. She is currently on MTX injections once a week. We tried taking her off the MTX as it had been a year and she was doing great. But that was a mistake and we had to go back on only after a month. She has been back on for 3 months now, she is doing ok. Labs show inflammation is  slowly decreasing. Her knees are still very swollen and she has limited mobility in them. Dr increased MTX so now we wait, he has also mentioned Enbrel?? Still not sure if we want to go there yet? Anyway just wanted to say hello and thanks for being here. It is nice to be able to "talk" to others who can relate.

Anne

Post #4221076
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Posted Wednesday, July 29, 2009 3:58 PM


 

Group: Forum Members
Last Login: Sunday, August 30, 2009 5:30 PM
Posts: 9, Visits: 9
Hi Anne, and welcome!  I'm pretty new here myself.  My DD Laura, age 13, has psoriatic arthritis.  It IS nice to have other parents with whom to commisserate!
Post #4221183
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Posted Wednesday, July 29, 2009 4:29 PM


 

Group: Forum Members
Last Login: Wednesday, November 18, 2009 12:48 PM
Posts: 101, Visits: 134
We had an almost identical experience. My daughter flared after two months off the mtx. Then, when we tried putting her back on, she didn't repond as well until we increased the dosage. It was crushing when she had that flare after all that time. But she got through it. We kept her on mtx for almost two years (can't remember the exact time) the second time and now she is off all meds and doing really good. It has been a year now.
Post #4221206
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Posted Tuesday, August 04, 2009 4:48 PM


 

Group: Forum Members
Last Login: Sunday, November 01, 2009 5:04 PM
Posts: 13, Visits: 12
Anne:

Welcome to the online community, though I'm sorry your daughter has the disease!  We have been on oral MTX for years (my daughter with poly JRA is now 8, diagnosed before age of 2) but lately it isn't doing anything.  Switched to injectible MTX for four weeks with no improvement, now about to start Embrel.  Our rheumy says the CURRENT theory is to start new patients on the Biologics SOON after diagnosis to shut the disease down.  It's the standard of practice with adult RA patients -- after a month of traditional meds, start the biologics if no improvement.  So a lot of docs are starting biologics fairly quickly.  Our rheumy says she's had at least 80% of her juvenile patients improve on the biologics, with only two really bad reactions, but those were kids with multiple health problems.  All that said, I'm still not excited to go to Embrel, either.  I spoke with the nurse at my daughter's school, and he said that kids do better with Embrel (fewer side effects) than adults, from what he's read.  Good luck making the decision:  I'll be making mine this Friday.  Welcome, again, and keep in touch.

Barb

Post #4222653
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Posted Wednesday, August 05, 2009 10:33 AM


 

Group: Forum Members
Last Login: Sunday, November 15, 2009 7:33 PM
Posts: 86, Visits: 164
Welcome...sorry that you have to be here but it is a great group.

My son was diagnosed in April of this year at age 5...he started on naproxen in March and MTX injections the first week of May.  We are adding Enbrel...we were supposed to start the 27th, but had insurance and pharmacy issues...and then my 8 year old daughter got strep.  Hopefully Alex will start Enbrel this Friday...he shows not sign of strep and my daughter has been on antibiotics since Sunday morning.  As scary as Enbrel is, especially with the new FDA warning...we feel we really have no choice.  The MTX is not helping him enough.  So we will start on the Enbrel and pray, a lot!!!

All the best,

Karen and Alex, 6, poly (04/09) plus a bunch of other 'stuff'

 

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