Rheumatoid Arthritis

This is my case and it would be helpful to hear some thoughts from people experiencing the same thing. At 13 I was diagonsed with Juvenile Rheumatoid Arthritis, but at 20 the disease went into remission (lucky me, I guess). Since hitting my 30s, I've had 'flares' but nothing too serious until now. All of a sudden, every single joint in my body has become affected, and drugs aren't doing much for me. I've always been very active all of my life, either swimming, cycling or simply going to the gym. Now I am struggling to get out of bed, it's pretty sad.

Does anyone know if this is typically how JRA works as kids become adults? Is it going to get worse from here?

Thanks in advance for any thoughts!

I don't think there is any one "typical" way it works for kids with JRA when they become adults. I was diagnosed at 16 months old and since around age 12 have gone through periods of overall remission and burn out in older affected joints, but then it spreads to a new joint or area every few years. Though even the new joint pain and swelling is relatively mild and mostly kept in check with Humira.

The going medical opinion used to be that kids with seronegative JRA (negative RH factor) should "grow out of it." I had one rheumatologist in my early 20's that argued with me that I didn't have JRA because it should have burned itself out by then...I never went to him again.

I don't think many researchers or websites really take us into account or study what happens to us over the long run in terms of disease progression or years and years of taking medications. Insurance companies certainly don't. I always have to make sure my doctors list my diagnosis on my visit claims as RA instead of JRA because my insurance company won't cover my medications if they see JRA. Apparently my age of 31 and that diagnosis cause problems in their computer systems!

wow, JRA at 16 months old?! That had to be difficult for both you and your parents!

In any case, thanks a lot for your reply, it does shed some light as to what I have being going through all of my life. For me, any time I was going through I very stressful time (i.e. my last year in college, or my first divorce), the disease became active again. And like for you, it hit a new joint every time. I am going through a ton of stress now and I think it explains why I am in such a tremendous amount of pain. Celebrex did absolutely nothing for me, other than hurt by bank account since the insurance didn't cover it. I have not yet found a specialist that will take my case seriously, or give me any real answers, so I have approached the NIH and looks like they will take me. I hope they are working on some cutting edge drug... at this point I don't mind being part of any study and even trying some wild treatment, I just want to have my somewhat normal life back.

Do you work out? How active are you? Does your mood ever get impacted when you can't excercise?

Hi,
Yes, it was very difficult for me and my family. It was very active and painful and damaging around ages 2-10. And in high school I had several surgeries to correct the damage. But my sister is diabetic and my Dad is a pediatrician and my mom was basically in charge of our care and exercise.

Celebrex never did much for me either and I took 400mg a day for about 6 years until the cox-2 inhibitor studies broke.

Like you, I have also noticed that stress or periods of not getting enough sleep also cause me to flare. But the biggest factor for me is heat and humidity. I love winter and snow because I feel great and can actually jog a little bit without my knees crackling, popping and swelling. Summer humidity really makes my hands and knees swollen and tender. It reactivated again two years ago during the year after law school when I was studying for the bar exam, was really stressed about not having a full time job, was working at the mall 8 hours a day -standing, which was murder on my knees and caused a knee that hadn't been active in over 10 years to flare. I had no insurance and therefore no medication. By the next summer after the bar it had spread to my right hand.

Congratulations on getting into a study with NIH. I have never been accepted to a study 1) because my disease isn't active/severe enough and 2)that whole JRA/RA thing again childhood/adult thing again.

I'm ashamed to admit that I don't exercise as often as I could/should. I'll be really good for a month or so and then I'll push too hard by trying to jog and send my knees into a flare and then I lose my motivation. I like to walk/jog in the park. I also like pilates and yoga (with modified moves for when I have to support myself on my hands and arms). And I LOVE to dance. I've been wanting to find a walking buddy or people to go dancing with me. I used to swim regularly in school, but there aren't public pools near me now and the private swim clubs are cost-prohibitive in my area. Swimming is one of the best exercises and my personal best one for losing weight.

Do you work out? What do you like to do? Do you have a work out buddy? My mood does get impacted by not working out, but it's impacted more by the weather.

Glad to hear from you. I'm sorry about your physician troubles. I hope you are able to find one that is a good match for your health goals.

Sorry the last post was so long, but I just remembered one thing that might be helpful for days when you are really hurting and feel like you can't exercise.

I have found that what I notice most when I don't exercise and stretch is how stiff and unflexible I feel. I really notice it in one knee and especially and in my hips and back. I feel so much better throughout the day if I just take maybe 5 minutes in the morning to lay on the floor and stretch. My back and neck often are sore in the mornings and I'm so tired/lazy some days that I literally just roll out of bed and onto the floor to do a few leg raises and stretches and it does help wake me up and feel better before getting ready for the day.