This is a Facebook-rant-turned-blog post. I am definitely looking for some feedback/insight on this one, because when it comes to The Great JA vs. RA Debacle, I don’t know what is considered to be the standard, or what is the “proper” and acceptable approach.

Even  whilst doing research, I seem to encounter different answers on the issue of whether or not the “juvenile” in front of “rheumatoid arthritis” just has to do with age of disease-onset, or, if they are completely different diseases, AND if a patient can have both in adulthood, or not, or if JA ever just progresses to RA past a certain age.

… OR to complicate it even further: can a child (say, age 10 or 11) develop the “adult” form of RA in childhood? (Early-onset RA versus JIA/JRA?)

I’m very curious to see how a rheumatologist or rheumatology researcher would answer my questions below and how they would respond to this issue I’m having:

Here’s my original post (with some edits for typos) from Facebook yesterday:

How many of you had JA (a.k.a. JIA or JRA) as were later diagnosed with RA, in addition to your juvenile arthritis?

Or did your doctor just kind of “switch” your diagnosis to RA once you hit adulthood?

On the flip side, how many of you were stuck with the JA/JIA/JRA-only label through adulthood, and did that hinder treatment options, access to meds or procedures, or availability of certain testing?

I’m falling into the latter category.

I got diagnosed with JRA/JIA around age 10 or 11. My rheumatologist won’t change the diagnosis OR even add “regular” RA to it, which is what I feel is the common and appropriate practice. (Not changing the JA diagnosis but rather simply adding on RA if JA won’t remiss in adulthood and if patient [in this case, me] meets diagnostic criteria for RA.)

Having only the “juvenile” arthritis diagnosis on forms, lab orders, and prescriptions etc. from my rheumatologist is hindering my treatment options and even preventing certain testing (such as the Vectra DA test, for example.) The great irony is that if I’d just go to a new rheum, now at age 32, with a “clean slate,” they’d diagnose me with RA at this point, not JIA. But my rheum will not add to or edit diagnosis, even if it would help me have more options for treatments or tests.

On some level, I understand that there may be an ethical grey area here (I guess? not sure why if patient meets criteria, though, and has positive labwork, imaging, etc.) and I do realize too that they are technically different conditions (often JIA is actually worse than RA,) however, many JA patients also develop RA in cohesion with their JA as adults, so I’m unclear what the problem is.

This caused an issue with my Rituxin, disallows me from trying Xeljanz and some other biologics that are only approved for adult RA, and now I got a bill from Vectra DA for $989 that my insurance won’t cover any potion of the test (*that I already had done) because it is only for RA – oh, and here’s the kicker: they currently have my blood (again, the test was already done, and I went out of my way too, to go to a special lab to have it done,) but they will not run the test OR give me the results since it’s only for RA not JA. Yet, they had no problem trying to submit it to my insurance, and then sending me a bill for almost a grand.

Something is off, or broken, here … and I don’t know who, if anyone, is to blame… but it’s hard enough dealing with these illnesses since childhood; the extra added stressors are just nonsense. (And often largely unnecessary.)

I have also had doctors (won’t name names) blame ME for this kind of stuff: “well, YOU asked for [insert med here],” or “but *you’re* the one who requested [insert test or procedure here.]” Perhaps I was; perhaps that is true … but it is not MY job to know what’s approved for RA not JA and vice versa, nor do the doctors have to listen to every request or suggestion or inquiry that comes out of my mouth! Patient-blaming is ridic.

I may be educated, proactive, and “up on” things, but let’s be clear: I’m NOT a doctor or a medical professional, so it should NOT be completely up to me to treat myself or know about diagnostic codes,  the semantics of disease names and diagnoses, what is for juvenile versus adult-onset RA, etc.

Not my job. Again, I repeat: NOT. MY. JOB.

But it is my body and my life, and all I’m asking for is compassion and due diligence when it comes to helping me to manage my care and cope with all that is involved in dealing with these conditions.

Thoughts?

[*image credit: Fight Like a Girl.]