At her follow up discharge appointment with her immunologist earlier this month, they officially stopped Phoebe's medication. The ulcers are a side effect that effects 15% of patients. With Phoebe falling into this 15% and how severe they affected Phoebe and the condition it put her in, her doctor felt that it is not safe to restart the medication.
While I absolutely agree it is not worth the risk to restart this medication, the decision to stop it has put us back to where we were in October... no answers, no treatments, and no relief from the pain and swelling for Phoebe.