How long was the first flare?

Arthritis Foundation Forum

Home

Welcome Guest ( Login | Register )

Rate Topic

Display Mode

Topic Options

Author

Message

PolyMom

Posted Saturday, June 27, 2009 5:22 PM

Group: Forum Members
Last Login: Tuesday, July 28, 2009 8:36 PM
Posts: 5, Visits: 13

My daughter was diagnosed in October with polyJRA. She then just turned two. It started with her knee then her thumb then her other knee and ankle over the course of a month. We started naproxen and prednisolone and the severe pain and stiffness went away but the swelling and sporadic days of pain persisted. We tapered off the steroid while adding methotrexate and Enbrel. Still swollen after 4 months of MTX and 2 months of Enbrel. She now has the other thumb involved and recently diagnosed with uveitis! However, her pain and discomfort rarely interfere with her activities and you really have to watch closely to see the arthritis impacting her movement whereas in December she had to pull herself across the floor with her arms because she couldn't use her legs for any support. It has been 9 months! She hasn't been able to eliminate any active joints and continues to recruit more. I wasn't sure how long a flare lasts. Is it a matter of getting the right combination of drugs? Should I expect this to be a part of our life with no remission? Once the first episode subsides does it come back worse? I feel awful complaining because we are lucky to have our happy little girl back jumping and dancing, I just wish it wasn't on swollen knees in Physical Therapy! Any info would be greatly appreciated.

Thanks, Erica

Post #4213215

Top

Juile

Posted Monday, June 29, 2009 9:46 AM

Group: Forum Members
Last Login: Monday, November 02, 2009 1:57 PM
Posts: 96, Visits: 126

For most kids - I think the meds should have worked by now. I'm so sorry your daughter has had to deal with this for so long. You can at least take comfort in knowing she is doing much better. You definately shouldn't expect to just have to live with active arthritis. They will find the right combination of meds for her to get it under control. Unfortunately, it has just taken such a long time. There are always the rare cases that seem to take longer than most, but you should expect that they will keep trying, and figure this out for your little girl.

Post #4213425

Top

Mom to Alex

Posted Wednesday, July 01, 2009 4:10 PM

Group: Forum Members
Last Login: Sunday, November 01, 2009 5:44 PM
Posts: 85, Visits: 163

I don't know how long a flare lasts...my son has been in a 'known' flare since March of this year...that's when we took him to the doctor...probably been going on much longer. Anyway, he's been medicated (naproxen and then MTX/folic acid) and under the care of the rheumy since late March...and I just called to let them know he's in enough pain that I don't want to wait until his July 20th appointment to do something about this pain. Granted he was sick so he missed his last two MTX shots but he has only been on the MTX since the beginning of May so I doubt that has anything to do with this.

I do think (and hope and pray) that the right combo of drugs WILL put our kiddos into remission...but finding the right combo, sadly, can take a while.

I hope your little one finds relief soon!

Karen and Alex, 5, poly (04/09)

Post #4213847

Top

CatP

Posted Monday, July 06, 2009 8:24 AM

Group: Forum Members
Last Login: Yesterday @ 9:54 AM
Posts: 18, Visits: 112

Erica, our daughter is still having her first flare also. She was diagnosed in January '09, however, upon looking back at photos it appears her swelling started closer to October '08. Her arthritis started in the feet/toes and then the knee. The doctor just increased her dosage of MTX to 10mg and she is to start physical therapy as soon as they can get her in. I have no idea how long first flares typically last. It's frustrating.
Cat

Mom to Claudia (35 month old with probable PsA)

Post #4214467

Top

Mom of Hannah

Posted Wednesday, July 08, 2009 9:43 AM

Group: Forum Members
Last Login: Tuesday, October 13, 2009 3:11 PM
Posts: 13, Visits: 23

My daughter (3years old now) was diagnosed in December 07 with JRA - it is in her knee and wrist. It has not spread since then but no medicine so far has put her into remission or even helped her flare very much at all. The only thing that helped her was cortosteriod injections right into the joints. She had them last summer and now again May 28th 09. She is taking naproxen, sulfasalazine, methotrexate and folic acid. They keep adding medicines but like I said none seem to stop the swelling, pain etc.. In fact before the cortosteriod injections my daughter could not walk in the mornings - now she is walking without even a limp.

I am reading a book about JRA and it says that the meds should have helped by now. I will take the book into my daughter's rheumy later this month at her appointment and see if we should be trying different meds etc. to get this under control. It seems like something should be working by now.

I hope your dr find the right meds for your child. Hang in there !

Hannah's mom

Post #4215054

Top

« Prev Topic | Next Topic »

All times are GMT -5:00, Time now is 5:25pm

Execution: 0.343. 47 queries. Compression Disabled.