Today we went to see her Rheumatologist for her 6 week follow up…good news is her currently affected joints aren’t worse; bad news is they aren’t better. It also looks like her elbows are becoming a problem.
We went in for her labs last Friday and her Sed Rate was down to 30 (from 38) and her platelets were down to 506 (from 560), so contrary to my belief the Naproxen is doing something, just not enough.
Bevin being nosy while waiting for our appointment to start
So this morning, after getting called back to our appointment a half hour late, we have a new “game plan”. After going thru all her joints again he reviewed her labs and let me know the Naproxen wasn’t quite doing what he hoped it would and we needed to go over our other options. He went over all of the drug options out there and their side effects, recommending Methotrexate (MTX) as his #1 choice, which after the research I’ve done and what her pediatrician told me, that seems to be the most common.
The main side effects we discussed were:
1. Nausea/Vomiting-he said this occurs in 1 of every 10 patients and said he sees it more commonly when taking the MTX orally.
2. Mouth Ulcers
3. Hair Loss-he said this happens about 1% of the time and is reversible.
4. Birth Defects
5. Liver and kidney damage
6. Lung damage-he said this is rare in children and seen more commonly in adults, especially ones that have smoked.
7. Possibility of cancer down the road
The MTX comes orally or injectable; due to him saying he doesn’t see the nausea as much in the injectable, and because we’ve dealt with insulin in our household (I had gestational diabetes) I felt confident we could handle the injectable version. He is also upping her Naproxen from 3ml to 4ml; little does he know that per her pediatrician’s recommendation after she was on 3ml for a week we went to 4ml, so she’s actually been on the higher dose for 5 weeks. Since he’s retiring I didn’t feel the need to tell him I went behind his back and got another opinion, we won’t be seeing him again anyway.
She couldn’t get out of there fast enough
So one more week on the just the Naproxen and then next week we will be adding in the MTX injections once a week. We will be changing her lab work from every 6 weeks to every 4 weeks while we find the right dose of MTX for her. Once she’s on a stable dose the labs will be done every 3 months. We will also continue her Ophthalmology appointments every 3-4 months.
I knew the MTX was the next likely step for Bevin between researching, talking with other JRA parents and speaking with her pediatrician, but I still cried on the way home. It just makes it so much more real that we are in this for the long haul…
Crashed on the way home