H has had chronic swelling in her ankle, mostly left but sometimes she complains about the right one also. For years it was just pain but in the past few months there is fluid.
So she has xray next week and then GP will send info to GI.
Meanwhile GI called to set up a conference on Friday. Her labs are showing flags now, anemia related, and that tends to be her sign of Crohn's activity.
Presumably, he will want to address it. If he wants steroids should I decline in order to get the possible arthritis diagnosed? Or is it better to just let the meds do their thing so she is better faster?
I will ask him this too, depending on what her options are. Just looking for experience related advice as ever.
Yes, an MRI or ultrasound is much more accurate. I would honestly want her seen by a rheumatologist before putting her on steroids. It will be hard for the rheumatologist to assess her if she's on steroids. I do know it takes quite a while to get into pediatric rheumatology (there are only about 300 pediatric rheumatologists in all of the US!) though.
The x-ray will likely not show arthritis damage yet. Damage can develop fast in kids with aggressive arthritis, but most often it is slow. So what a rheumatologist would do is examine each joint (even ones that don't hurt, because just like with IBD, you can have inflammation without pain or with young kiddos, they are so used to pain that they don't complain) and look for signs of inflammation - swelling, fluid, redness, warmth etc.
An ultrasound will show active inflammation. So will an MRI. An MRI is more accurate and will also show early stage damage that doesn't show up on x-rays yet (such as small erosions).
Arthritis with IBD can flare when the IBD flares or it can flare independently. Typically, if peripheral joints are involved (peripheral means joints other than the spine, which are called axial joints), particularly large joints like knees, then treating the Crohn's may get rid of the arthritis.
If the arthritis is the type that flares independently, then you could treat the Crohn's with Humira and she still may have arthritis. At that point you consider adding something like MTX or upping the dose of Humira.
Axial arthritis (involving the spine or sacroiliac joints) almost always flares independently of the Crohn's.
With peripheral arthritis - it could go either way. It's possible that if you get her Crohn's into remission the arthritis will go away. But it's also possible that a child may have Crohn's that is in remission (like my daughter) and yet still have very active arthritis (in my daughter's case, both axial and peripheral).
There are certainly cases of peripheral arthritis which flares independently of the Crohn's.
Given H's case, it sounds to me like her Crohn's isn't well controlled. Is that right? I do remember that she had a low Fecal Cal a little while ago. So you may need to change meds - typically Remicade would be the next option.
There are only so many drugs that treat both inflammatory arthritis and IBD - Humira, Remicade, Cimzia, Simponi. Anti-TNFs treat both axial and peripheral arthritis.
The other option is Stelara. That works well for peripheral arthritis, but NOT for axial arthritis.
I am surprised that H hasn't been referred to rheumatology if she has been complaining of pain for years. Arthritis, just like IBD, can cause significant damage. My 22 year old will be having joint replacements this summer.
Just like with IBD, you want to treat it aggressively, and get it under control and ideally, in remission. That lowers her chances of permanent damage. Permanent damage = permanent pain, so you definitely want to avoid that.
I would push to have her seen by rheumatology as fast as possible.
Also want to add - anemia can be caused by both Crohn's and juvenile arthritis. If she has Crohn's symptoms right now, then it's probably that. But if her Crohn's has been quiet and well-controlled, it is possible that the arthritis (if she has it) is causing anemia.