I haven't written in a while because I've had more bad days than good. In fact, I don't remember the last "good" day I've had. My health has seemed to keep deteriorating. My last visit to the pulmonary doctor didn't go so well. My next visit, which will be the first part of April, will consist of another CT scan and discussing changing my treatment. I'm currently on 30mg of Prednisone a day and it's not seeming to work. So the next step is to start treatments of Methotrexate. Once I started reading about it, I got scared. This is a drug used to treat cancer patients....basically chemotherapy. I've done a LOT of reading about it including blogs from people that have Sarcoid and take it. It does have some very scary side affects.
Since I wrote last, I have also found an awesome primary care doctor!! She is really a nurse practitioner but knows everything an MD knows. She even knows about Sarcoid!!! I was so happy when I found that out that I was in tears!! She's been awesome!! I went to see her yesterday as my blood pressure was really high all weekend. She put me on Lisinopril 10mg for my blood pressure. I also discussed with her about the Methotrexate (which is also referred to as MTX). She highly recommended it if the Prednisone isn't working. She said the first few treatments will be extremely rough and I will feel as though I'm going backwards instead of forward, but she said most patients feel so much better. (I'm skeptical because they told me the same thing about the Prednisone.) My anxiety got so bad that they have doubled my anxiety meds, which seems to be helping!! I also have an extra anxiety med for when I feel I need that extra help.
I've also started the process to see if I can get disability. The visit to the doctor yesterday confirmed that I need to start this process. She said if they are discussing MTX, then that means my "quality of life" is deteriorating. I told her most days I have a hard time doing the simplest tasks. I know this process will not happen over night or even in the next few months, but I feel so much better knowing it's started.