Well it’s official, I have been given the go ahead to start Biologics and the winner was Humira.
I finally got to see my specialist and I think it came at a perfect time. Tomorrow I am starting 5 pills a day and it’s really starting to kick my butt. My ear infections have been going back to how bad they used to be when I was a kid, wearing a jacket hurts my shoulder so bad some days because of the joint pain, sleep and I have a weird relationship where I am so tired all day and then when I finally crawl into bed I can’t sleep, I’m starting to get the shakes in my arms and legs, and I think we’re slowly creeping back up to a flare up.
I told my nurse practitioner about what happened this weekend that kind of made me question what was happening with my body and she was pretty concerned. My body changes so fast! I felt fine all day, in fact I felt like I had extra energy! I managed to slowly start spring cleaning my personal belongings and then in the evening went out with my girlfriends for dinner. Everything was good. And then in 15 minutes all that turned upside down. I had the worst poop attack in weeks that was so instantaneous, I kept burping and feeling like I was going to vomit, I kept changing between dying of heat and feeling like I couldn’t get hot fast enough, and my shakes were so bad. I felt like I was convulsing. But then an hour later I felt completely normal again, minus the urgency to use the washroom.
My lab results all came back looking good, which we were all excited about. My c-reactive protein is back to normal levels! But after giving her the low down of my symptoms and explaining my weekend, the urgency to get on biologics seemed so forced. The goal is obviously to keep my body at the levels I’m currently at, but with the rate my body is going at she’s afraid Prednisone isn’t cutting it anymore and I go down to half my dose next week already. She said the symptoms I am experiencing usually happen around to 20mg mark and I’m only at the 30 mg mark.
Now when I say urgent, I mean urgent. She already arranged for an advocate and nurse represented by Humira to contact me, but she had explicit instructions that if they could not get me the medication for this week, I am to see her personally next week so that she can give me the drug herself. And I don’t know what my case file looks like, but I was even temporarily exempted from paying for the drug for now because of the urgency of my case and am for now considered a compassionate case.
It all seems like such a whirl wind. Just when you feel like you are starting to adjust, the rug beneath you gets ripped out. I don’t even think that I have fully processed that I will now have to give myself injections for the rest of my life or at least until the drug stops working. I will never stop taking drugs. What! Months ago I could barely rationalize taking Tylenol or Advil for colds. I don’t even know how I feel about poking myself. I’m a baby when it comes to paper cuts……. And she said it burns when you inject it. I wonder if it’s like the Gardisil shots where you could feel it travel down in your veins?
I’d love to know what people’s experiences were on it. What should I expect after taking it? What’s a good day to even start taking it? Should I do it on a weekend to have time to recuperate or a Monday where my schedule is the same for the most part because of work? Will it kick my ass hours later or is it a whole day kind of thing? So many questions swirling in my head.
I know a lot of it will be answered once I actually meet with my nurse, but it’s the anxiety! Always have to stress and worry way before things even begin.
But here is to the next chapter of my journey I guess? Fingers crossed this works because it sounds like we will be in this together for the long haul.