Posted 2/29/2020 6:52 AM (GMT -7)
Hi guys, been a while since I have been on here. I am overall doing well. I am down to 1.25 mg of hydrocortisone, which is the equivalent of .3mg of Prednisone. I had a good endocrinologist, finally, but she quit the practice. (Was on high dose steroids so long I have suffered from secondary adrenal insufficiency, and so miserable trying to get off of them) I had a rough day yesterday, but normally am down to 1 to 2 BM a day. I have been on Entyvio for two years now. For the last 6 infusions, I have had elevated bilirubin on 5 of them, and this last one my total Bilirubin was 2.1, which was my highest yet. I am aware that that level is not harmful per se. I did some additional reading, however, that created questions. I read a current side effect list for Entyvio, and liver and Kidney issues were listed. The second thing I read was a Ncib article about the connection between Primary biliary Cholangitis and elevated bilirubin. So now I am wondering if Entyvio increases that risk? I may be totally connecting two things that have nothing to do with each other. My GI has only ever put on my labs that my bilirubin is elevated, and that he is going to keep an eye in it. The thing that got me reading is that I have been painting my kitchen. I used a respirator while using oil based primer, but I was in severe body pain for 3 days afterwards. I finally went and bought milk thistle (milk thistle helps kidneys and liver) as I mine had expired. about an hour after taking some, my urine was very dark and foul smelling, and I was in less pain. My Dad has Gilbert's syndrome, but wouldn't that make the elevated bilirubin consistent?