Posted 5/18/2022 5:19 AM (GMT -8)
Hi Keith, she didn’t do well on 6mp it was the first drug along with a mesalamine that she used for a while and didn’t gain remission, along with added topicals at that time. It went like that for a while because she was away in school and didn’t know what was supposed to be her new normal. She never did use imuran, But ended up flaring badly, and was put on remicade and that worked almost immediately for a couple of years. At that time she had left sided colitis.
We. can ask about these meds and see if they might work now that there’s less inflammation.
Straydog, she never had anaphylaxis from remicade, the dr is concerned that she could experience it going back on it.
The drs best diagnosis is drug induced lupus, she does test positive for sle sometimes, and her symptoms coincide. The drug induced evidence seems to be gone.. she remains on lupus meds, and has symptoms that include burning skin on her torso she describes as a bad sunburn and joint pain. These come and go as her colitis flares. They took her off remicade but the new symptoms continue to come and go 3 years later. . After 2 years she went on entyvio but didn’t feel well on it and it hadn’t started to work, maybe she should have given it more time, but she didn’t think it was helping. Now the xeljanz isn’t working at 10mg 2x daily.
Remicade was the medicine that she felt good on but the dr is concerned to restart it.
She may go to rinvoq.
I have been asked why she doesn’t post herself, but even after all of these years she doesn’t want to, but is ok with me writing. Of course I discuss what I write, and appreciate all that I have learned here.