Questions about JSpA

[Clash]

Maya142, my little penguin, I have a couple of questions about joint pain and JSpA. Some of these, admittedly, I may have asked before. For some reason I can research and retain about IBD til the cows come home but I cannot seem to drag myself through the JSpA stuff.

C was dx'ed last May with JSpA by a rheumatologist. He literally came off the table when she pressed at the lower left side of his back. She x-rated and saw no fusion(?) and said he had decent range of motion. She stated it explained his knee joint pain, back pain and ankle pain.

At follow up we weren't really happy with her but at that time he was having wrist pain that she said was active disease. The wrist pain subsided.

He just called otw home from work and asked that I have pain med ready and something strong if we had it. He never asks for pain med especially px as he can't stand how they make him feel. So I know he must really be hurting.

But every time I go to research JSpA I read about back, spine, knees and ankles. So is the wrist really associated with the JSpA?

He has an appt with a new ped rheumatologist but it isn't til April. We are on the cancellation list and trying to get in sooner.

 

[my little penguin]

To answer your question
-yes
DS has it in both of his hands
Rare ( most talk big lower joints and back )
But for DS its hands
So easily could be wrists

Mri are recommended for the hips and spine if there is pain easier to detect early damage
Xray only picks it up after the damage is done .
Hope he feels better soon

 

[Maya142]

Yes - it is rare like MLP said but possible.

Fusion at his age would be unusual. Not impossible, but unusual. JSpA tends to only show up on MRI's - if SI joint damage is bad enough to show up on x-rays, it's usually called Juvenile Ankylosing Spondylitis (which is what M was eventually diagnosed with and is quite rare, especially in a girl).

It's worth doing MRI's of his back to have a baseline - that way you can tell whether Humira is working or not in the future. M has yearly MRI's to see how much the JAS is progressing. S only has MRI's when she's flaring - her last one was 2.5 years ago (because she is doing well on Humira + MTX).

Kids are much more likely to have pain in peripheral joints (Joints other than the spine and hips count as peripheral).
M has pain in her SI joints, spine, ribs, hips, fingers, knees, heels, jaw and elbows. She's had pain in her wrists in the past but they're not an issue any more thankfully. S has (some) pain in her SI joints, hips, knees, wrists and ankle.

My husband, on the other hand, has only had pain in his spine, SI joints, hips and ankle. His spine is now partially fused and he's had his hips replaced but has been in remission (basically no pain) for years!

There's a book called "It's Not Just Growing Pains" written by a well-known pediatric rheumatologist that has a good section on JSpA. It's a bit dated in terms of treatments but still has some good info.

In our experience, seeing a pediatric rheumatologist is definitely worth it. They seem to understand JSpA better than adult rheumatologists and treat it more aggressively. We had a really hard time finding a good adult rheumatologist for S.

I hope C feels better soon. A wrist brace might help. Keep calling the ped rheumatologist's office! Sometimes they get annoyed and squeeze you in

Let us know if you have other questions!

 

[Farmwife]

I hope he's feeling better soon, Clash. It's no fun to be in that much pain.

 

[Clash]

Thanks you guys rock! When C flew off the table as she pressed at that low low left side of his back, she was quick to say definitely JSpA. I believed her because it explained the back pain C had experienced for so long. But I wasn't sure where this wrist pain fit in.

Also, I'm concerned the ped. Rheumatologist may see it another way and just say it's his CD and blow C off since the back pain has subsided and he has good range of motion.

 

[Maya142]

C may have signs of JSpA in his back that you can't see - flattening of the back, poor spinal mobility. An MRI might show erosions if he's had back pain on and off for years. Just emphasize the back pain and the fact that his joints have flared when his CD has been quiet (right?! I vaguely remember that).

Many kids are diagnosed with JSpA without SI joint pain because it generally develops after a few years in kids. I wouldn't worry too much.

 

[kimmidwife]

Clash,
Insist on imaging. We saw a Peds rheumotologist a while back who totally blew us off. We really need to find a new one as Caitlyn has constant joint pain and gets back pain at time. Her genetic screen from 23 and me showed her at risk for JSpa.

 

[Maya142]

Kimmidwife, if you are near New York City then I can recommend a good pediatric rheumatologist.

 

[kimmidwife]

Maya,
Yes. I can see if they take our insurance.