Hi all, I’m so glad to have found you – have never posted and am hoping for some wise words!
My daughter was first diagnosed with JIA aged 5 after first flare up at 3. We then had many years of one flare up every other year max (controlled w ibuprofen) until she was 9 when both knees swelled up. Since then one knee in particular stays a bit swollen although we have had it drained twice and done all we can in terms of acupuncture, exercise and diet. The consultant says the last MRI showed inflammation was spotted all over the kneecap even tho my daughter doesn’t feel it.
We lucky as it hasn’t stopped her doing sports, dance etc – she says it doesn’t hurt (and she would say if it did!) tho feels a bit stiff and ‘funny’ sometimes. However the consultant is now giving me That Look and saying we need to put her on methotrexate to prevent joint damage. I know that that risk is real but in every other health care situation I’ve had I’ve resisted meds, esp in a situation where there is no pain for goodness sake and ‘wait and see’ seems the no-brainer approach. The acupuncturist, half of my family and a young woman in her early 20s I met randomly who has RA all say ‘don’t’ while the US side say ‘do’ and I’m torn.
Does anyone have any thoughts? Its my understanding that once on the big drug you’re on it for life – how would she ever know she was OK to come off? At this point I have no idea what her knees are supposed to look like – maybe they are just knobbly like mine(?!) Can I insist on another MRI or is that a bad thing to do? Probably am in denial but it seems mad to pump her full of a chemo drug just when puberty is just beginning to start esp when it doesn’t even hurt her ..
Any thoughts v welcome. And thank you for being there! best wishes to all, Victoria