JRA | Arthritis Information

Katie and all you others that have suffered with JRA please read. My daughter has ben complaining with body pain for a few weeks now. I thought growing pains, as she has been very healthy.{she is 10} Yesterday I took her to the doctor. The doctor ask "Are you stiff when you wake up in the mornings? My daughter answered "yes" The doctor ask for how long? My daughter said" As long as I remember " ISN"T EVERYONE? I was really shocked. She had never mentioned it to me. On exam the doctor found her pain to actually be joint pain, and she is running a bunch of lab work. I'm so worried that she may have JRA, so is the doctor.

Could you please tell me how you remember your JRA starting? I'm a worried mom.

For me the first time we knew somthing was wrong was on vacation, during the day my ankles got swollen and hurt.....that night i got a high fever. Im not sure if i ever had joint pain before that. I was 8I'm sorry I can't help, I was only 18 months old. - This is all I know.....Let me think on it a bit though. Sorry I remember pain. I remember not being able to keep up. One of my earliest memories was of a huge knee - that made me scream when I forgot and tried to move fast. Okay so - my mom says that it started in my knees and ankles. I would just SIT everywhere. Then it came into my hands and wrists, this was all very fast too. I dunno. Like I said, all I know is JRA, so this is tough.

What exactly are you looking for? What are her pains like? I'm not sure what else to ask.... I'm trying!!! I guess ,I'm just wondering,how JRA differs from RA adult onset, as I have. She has complained with her ankles over the last couple of years, and she does tire easily. I hope that by her seeing my symptoms, that it did'nt make her think her morning stiffness was normal, and not complain. I know I will just have to wait on the lab work. She is so afraid of needles, and I know how harsh ra treatment is. I'm praying she does not have it.Mine started with ankles, then wrists and knees hurting and being swollen, and shortly after morning & evening fevers and rash. I was eight yrs old. I had been taken to the doc many times in teh years before because my ankles and legs hurt, but they always said it was growing pains. Now we wonder. My lab work has *never* shown the JRA. Hmmm. I don't know. I'm hoping that she's not subconsciously copying your symptoms either. Please don't be offended by that - I'm assuming she was very young when you were diagnosed, lots of kids copy things without even realizing it. And then again, no one's ever proved that RA *isn't* hereditary. In all honesty, if she DOES have it and she's had it as long as it seems, I'm willing to be that it's not very aggressive right now. Which is great! She can start with the simple drugs - NSAIDs. Have you seen any swelling??? That was about the only way that anyone knew I had it - that and until I was medicated, my x-rays showed it. Since she is still growing, look into things like splints and braces to keep her joints growing properly. I had several, and only had to wear them at night. I'm rambling...sorry!

Ginni:

I recently answered a post by English Rose pertaining to Adult Onset Still's Disease. AOSD is virtually the same disease as systemic onset juvenile rhuematoid arthritis. Here is what I wrote to Eng. Rose:

"I'll relate my experiences as best I can, but not all Adult Onset Still's patients "fit the mold" 100%." As best as I can reconstruct the onset of this disease here goes:

Woke up one Sunday morning feeling okay. By afternoon, I had a huge pain in the middle of my chest that only felt better by bending forward. The pain persisted during the night and the next day I went to my M.D. who diagnosed me with pericarditis (inflammation of the lining of the heart). It took me a long time to kick the pericarditis. Though I had been complaining of joint pain, fatigue, and all the other non-specific things that go along with a rheumatic type illness, it was dismissed as "all in my head" and that devil "depression." Shortly after I was over the pericarditis, I started running the fevers. Very high fevers would onset in the late afternoon (after doctor's office hours, naturally) and would break by morning. The fevers were in the range of 103-106 degrees. Chills, naturally, accompanied these high fevers. The doctor dismissed the fevers as "some kind of bug, take some asprin." My lymph glands would swell like crazy and be very tender in both the throat area and the groin. I didn't get the fevers daily as many of my fellow Still's suffers do -- mine would come every couple of weeks and then gradually more and more time would elapse between them. This phase lasted for years. After the fever, I noticed a very pale pink/coral rash on my chest and abdomen. It was very curious as it didn't itch. I also noticed that my body temperature was reset lower after the fevers. I would get "normal" temperatures in the 95.3 to 96.4 range. My formal "97.3 normal" has gone forever. The bilateral joint pain increased, and then finally one morning I awoke and looked at my hands and saw the synovial lumps above all my knuckles (with the exception of the thumbs). By then I had a new doctor who diagnosed me with RA. That still didn't explain the really high fevers and rash that came and went. It was only when I had been describing the fevers on the board (the old AI) that someone suggested that I look at the symptomology for Adult onset Still's disease. I fit the mold pretty well. I suggested it to my doctor who said "that would explain things a lot better."

I no longer get the high Still's fevers (or haven't had one in several years) and when I saw a rheumy, it was confirmed that I had Still's. She did say that the fevers are self-limiting. The only time the rash appears anymore is after a really good hot shower. Still's rashes, as I understand it, can appear anywhere, but most frequently on the chest or abomen.

You will find that the symptomology for systemic onset juvenile rheumatoid arthritis is almost identical to AOSD.

There are a lot of things in my past medical history that could point to having this disease even longer. I had very frequent stomach complaints when I was a child (and was hospitalized at one point for an undiagnosed illness), I had frequent high fevers, my mother confined me to a darkened room for one day citing that I had "the one day measles" etc. etc. A couple of my doctors now think that I may have had JRA but it didn't become acute until adulthood. Who knows?"

Not ALL JRA is systemic onset, so symptomology can differ. Hope this helps some.

Thanks to all of you that have answered so far. You have shared some good info.

Katie, I am not at all offended by what you said, It is a possibility that she may be emulating my symptoms. Thats waht I'm hoping.

She has had swollen, painful ankles, and rashes over the last few years. The doctors have called it growing pains and eczema up until this last visit.

Whats going on right now, appears to be about the same, as what I suffer with a flare.

Its good to hear that if she does have ra that she can start with NSAIDS. The doctor actually gave her a prescription for naproxen, after the appointment the other day.

She saw the doc on Thursday, and she has asked every day since "Has the doctor called"? I told her that all her bloodwork may come back fine, and that she may just have some kinda virus. She said " If they don't find out what is making me hurt, I'll be a hypocondriac the rest of my life"

Anyway ,Katie thanks so much for your input. I will post an update when her bloodwork comes back.

Thanks, Ginni