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1716849 tn?1308876749

Is my JRA gone? I still have pain, but it isn't the same.

I was diagnosed with JRA when I was 2.  It started in my foot, moved to my left knee, and stayed there.  It was pretty bad - I limped everywhere, it always hurt, and my poor muscles in that leg were weak.  It started to get better slowly when I was about 9, and by the time I was in high school, it was almost normal.  

When I was 15, though, it came back worse than ever.  I think it was a combo of wearing high heels to dances, beginning to run on a treadmill, and the weather and lifestyle changes Hurricane Katrina brought me. Right after Homecoming, my other knee, right foot, middle finger and thumb started hurting and swelling.  Eventually, I had to physically drag myself with my arms onto the floor from my bed, and to the shower to stretch my joints.  
That died down after a couple years, fortunately.  

Now I'm 20, my knee is normal temp and not swollen, and I can stretch it all the way!! Also, I'm still building up muscle in the leg, so it's getting to look pretty regular.  But while the old pain is gone, there's still a cracking sound when I stretch it, occasional stiffness, sometimes some aching, I still can't run on it (it feels like it'll shatter), I can't kneel on it at church, and after a while at work, it gets sore and stiff, and so does my hip for some reason.  It just feels so delicate - not at all like my right leg.  I'd like to know what this means.  For my future.  

I'd love to be a runner.  I want to kneel at my wedding - the whole time!!  I want to be able to work this dang retail job as long as I need to.  I just need someone to give it to me straight.  What exactly is this and will it ever go away?
2 Responses
1193998 tn?1265121197
Hi, I've had JRA since age 5 and am now 51. My disease has evolved over the years. From age 5 to my teens, I was in a constant state of flare in nearly all my joints, mainly my knees. At about age 20 it abruptly went into remission and for about two years I felt normal and thought it was gone. It came back with a vengeance and settled into a pattern of a couple bad, aggressive flares a year with relative remission in between.

I was pregnant twice and experienced remission during pregnancy, but suffered post-partum flares that were difficult to bring under control. Somewhere between my first and second child my rheumatologist convinced me to try methotrexate (I was scared of it) and I haven't looked back.

Though I still had one or two flares a year on mtx, the medication slowed the flares down enough that they could be more easily controlled. About 3 years ago I added Enbrel to the mtx and I haven't had a flare since. I'm as stable as I've ever been.

Anyway, I guess I'm telling you all this to illustrate that your disease will change over time. Please keep seeing a rheumatologist regularly, because the disease may go "into hiding" now and then but probably won't just go away and stay away. The continuing pain and stiffness you describe is probably joint damage caused by past disease activity. Though my flares are suppressed, I still have pain and stiffness in many joints, probably from past damage that continues to gradually get worse as I get older.  In other words, RA can lead to OA (osteoarthritis) at a young age.

Again, keep seeing a rheumie and ask for a referral to an orthopedic surgeon, physical therapist and/or pain management specialist who may be able to get your to where you can run, or at least do more vigorous exercise. It sounds like you may have some hip damage, too, so have that x-rayed and evaluated. There are a number of non-surgical and surgical options that can give you pain relief.

If you're on Facebook, look up Jeffrey Gottfurcht, who suffers from RA and recently summitted Mt. Everest!

No two RA patients are the same, so what I'm telling you about my path won't necessarily be yours. With proper treatment, chances are you'll live something pretty close to a normal life, but without treatment, the odds that you won't go way up. Don't go it alone! Stay with a good rheumie. :)

1716849 tn?1308876749
Thanks for all the advice.  Maybe I should make appointments with a rheumie, especially since I haven't in a couple years.  I remember methotrexate! I used to take that and plaquenil and got injections every couple of months.  It's been a long time since the pain has been that bad, though, fortunately.  
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