Just about an hour ago I got my FIRST injection of a biologic -- Stelara. And although I don't feel anything physically (I know, I know -- it will take a while -- perhaps weeks -- maybe even months), psychologically I feel more encouraged than I have in a LONG time.
I was acting all brave about giving myself the injection until I watched the video, and saw the needle. And I couldn't get the enormous COST of the medicine out of my brain (fortunately, insurance covered almost all of it, but there's not much margin for error and I was terrified of screwing it up), so I went to my primary care doc and her nurse injected it for me.
Anyway, I just wanted to share this milestone with you all. It took several months to get to this day (trying other meds, additional cardio workups, weeks of phone calls between insurance companies and doctors offices and pharmacies), but I'm here.
I know the Stelara might not even work. But at least it feels like a gigantic step in the right direction. It feels like a step toward hope and "normal."
I am hoping for glimpses of light and sunshine for all of you who share this journey with me -- this journey of PsA.
Seenie, thanks so much for checking on me. It's been a hard week. I feel like I'm going backward instead of forward. I switched back to the Methotrexate last week from the Arava. Most of the research I've read couples Stelara with Methotrexate for PsA. Arava also made my skin incredibly sensitive to the sun -- and I really like the sun. This past week was finals week, and this past weekend was commencement weekend. There were so many things I wanted to do, so many of my senior students that I wanted to spend time with, coffee and lunch dates, etc. But I could only do the bare minimum. I was in quite a lot of pain, exhausted, muscle-weakness. I'm getting pretty discouraged. Wondering if I'll ever feel like "myself" again. I'm trying to stay hopeful, but it's getting harder. I just can't seem to get past "the gap." Thanks again for the follow-up. I truly appreciate it.
Hey Niel, sorry it feels like you’ve take be a stutter step. It sounds like you had a busy and stressful week with graduation. I think it’s easy to underestimate how much a minor change in schedule can set you back. You’ll be back in the sunlight soon. Hope you get to take advantage of the long weekend for rest.
Sybil, thanks for these helpful words. I'd never really let mtx build up in my system before. We switched to Arava fairly quickly. I'm working on being patient, but that's hard sometimes:( Hope you feel better very soon!
sybil said:
Niel, I've switched back to Mtx from Arava + Sulfasalazine 3 weeks ago. Having been on Mtx for 18 months up until 7 months ago, I kind of expected it to pick up where it left off - making me feel okay. Instead I've been where you are by the sounds of it. Of course, mtx is going to have to build up all over again ... I'd forgotten. So as I haven't started Humira yet, and as it's still very early days for you with Stelara ..... I guess gritted teeth are required.