so I know I haven’t posted here in a while and I’m probably gonna make a post soon kinda reviewing the last year but for now I have an update that really bothers me
so I’m an outpatient at the university hospital where I get treated for my autoimmune hepatitis and it’s been bothering me for a while because it feels so unorganized and you just feel anonymous in this mass of patients, appointments were only possible tuesdays, I could never really reach my doctor because that’s not how it works at the university hospital, you had to rely on them calling you, and it was always said “oh yes I will call you when your lab results come back and something is not normal” and then I would wait for the call and it never came and I never really knew if my lab results were okay or if I was just forgotten? anyway I just didn’t feel properly cared for there recently and then on top of that I haven’t really seen my doctor for my last 3 appointments because she always had emergencies and she sent me home with a prescription and then this week she was sick and then I learned she isn’t coming back at all because she is on parental leave next year??
so yeah I had my appointment with this other doctor this week and he wants to put me on a budenoside medication (I think the american version is entocort) so he makes me this whole new medication plan and I was taken by surprise since I have never heard of that medication before and why did my other doctor who I have been with for years never once mentioned it? this whole situation left me so confused and conflicted that I didn’t even get to ask any questions and he sends me home with the new med plan and the prescription and I’m just like??? here is this new doctor I have never seen, who maybe skimmed by file a few minutes before seeing me and decides to change my medication that has been working (mostly)??
so now I’ve done some research on budenoside and while it sounds good how it works and that it is locally and doesn’t have the same strong side effects like prednisone, some things have me really worried, especially the side effects that do occur and how it will affect my blood levels? I don’t know what to do, I got the budenoside already but I haven’t taken it yet because I feel so confused and lost since I don’t have a doctor anymore? like I can’t go anywhere if I have problems with it or ask someone questions? also I don’t want to take new medication which I don’t know how they will make me feel right before christmas? this whole thing with the university hospital is such a mess. I mean I do have an appointment to have my blood checked next year but not an actual appointment with a doctor, so how can I know that he will actually call me to talk to me about my results? oh man I just don’t know. maybe I will wait until the new year and ask my GP what to do and if he can refer me to a gastroenterologist...
does anyone has experience with budenoside/entocort with autoimmune hepatitis?
