Thank you for this. My mother got diagnosed with AOSD at age 62. About 2.5years ago. Though she never had all of the three symptoms together. They were all there separately. When she had high fever, she didnt have rash, or when she had rash, she didnt have high fever. She had muscle weakness, pain in the joints. Swollen fingers, sore throat....the first couple of flare-ups were very confusing and we didnt continue the medicine resulting in complications. Multiple organs were affected. She was in the ICU for a month. With a high dose of steroids and methotrexate, she normalised but still not yet back to the way she was before. After two years, we began to reduce her steroids. Reached all the way to 2.5mg corticosteroid+20mg methotrexate+200mg hcqs and other supporting medicines. But now again she has had a flare up and the doctor is suggesting we change the medince to tofacitinib or tocillinib. We can't seem to take a decision since both these meds can have very serious side effects! Please give us your opinion.
@9:03 "may end up in your hands till it's too late" When i went to the er for my full body rash + abscess on left elbow (2020) i got sent home. no meds, no labs, only an iv. the following morning i went to another ER that was questioning the previous' reason for their doings, all the while they gave me a cortisone shot and it was 5-10 minutes later, it went south i cant remember what happened from multiple areas and kinds of pains. 80mg of predisone + monitoring for 2 days finally got me home from there was a 38 day battle for the rough and on going issues to this day. Currently i take methotrexate injections for flare up management 3 years later when i first went in to the er i just though i had corona since it was march of 2020 with the fevers and rash + abscess diagnosis was in 2021 but diagnosis was over the course of 3 years in 2018 i had only abscesses but my doctors couldnt figure anything out at that time
