How is Liam doing?
Thanks for asking Pam, he is down to 20mg pred a day, and while at 40mg and 30mg he had no pain, however it has returned a bit now in his spine and ribs, still has the odd fever but so much better overall, even his eyes. His local hosp paediatrician does not want him having the pred and then MTX (as planned by private RD), she feels that a virus of some sort started this off and eventually it will go away, but she has no answer for his pain relief and constant nausea. The poor kid now has Cishuings syndrome from the pred and he has really swollen up around his face and tummy, we have had to go out and buy him a new wardrobe as none of his clothes fit, he doesn't want to see his friends as he is embarrassed. Anyway hopefully he will not go back to the pain levels and immobility he had prior to pred, its a just wait and see approach I think. Thankyou Pam so much for asking, I wish you a painfree Christmas and dare I say new year! I really love all of my friends on this board, my life is so much easier and enjoyable thanks to you all, love Janie.XXX
That is just so sad that he is feeling he does not want to see his friends. My heart is breaking for him. Janie, this has been going on so long it does not seem likely that it is going to go away. It does sound like it could have been triggered by a virus but I think a reactive arthritis would not go on so long. Also, did they give him the huge pred dose but no DMARD or Biologic? Sorry, I can't remember. Seems like it would be well worth a try to get him going on at least MTX while on the pred so the MTX can kick in while the pred is helping with his pain. If he is already starting to have pain again at 20mgs I would be afraid to continue the taper without having something started to help the arthritis. If you ever want to chat with the moms at kidsgetarthritistoo.com I know you would be so welcomed there
Perhaps an omega-3 supplement (run it by the docs before starting on the regimen), or one of the antibiotic DMARDs might be of some help, if you're looking to avoid pred/MTX/biologicals?
Thanks Jasmine, that is a great idea too, will check with Doc. He has just finished a 3 month regime of penicillin 250mg am and pm, but there was no significant improvement until the pred. Thanks again, Janie.
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