I feel like there was so much personal build up to the first dose. I was nervous, scared, excited. I went to the infusion center and 5 hours later came out with 300mg of Ocrevus in my system. So how did it go?! How did I feel? Well. I woke up the next morning. I was 24 hours in and I hadn’t blown up yet. Of course, I obviously didn’t believe I was going to spontaneously combust. But anything is possible, right? I will say that although My B cells may be exploding, my body seems to be holding up just fine.
Still, the whole thing is nerve wracking to think about the potential allergic reaction or risk of a deadly brain infection. It was a relief that the infusion seemed to go well. I didn’t really feel that different other than being pretty exhausted and hitting a wall a couple of hours later. Because of the potential for an allergic response, they give you an antihistamine. Good ol’ Benadryl put me to sleep for a little while, and the Solumedrol steroid made me feel weird for a little bit. I was a little annoyed because I was looking forward to reading my book undisturbed for a bit with this view.
But, for the most part the few hours of infusion with the medicine went alright. No immediate reactions. I paid attention to how I was feeling for a while. A couple hours post infusion and was super super tired. After running a couple of errands it was definitely time for a nap. No itchy throat or heart attacks from what I could tell, so carry on.
I was pretty tired on day 2 but nothing out of the ordinary. On the flip side of my worst fears, was I expecting some miraculous transformation? To never feel a symptom again? No. I don’t particularly care for the in between waiting game, though, and I just want to get dose 2 out of the way. I remind myself to be patient. From what I read online, the drugs can take 6 months to a year to show improvements in existing lesions or to stop new ones from forming.
Overall, though, I felt pretty good leaving that medical office on Peak One Drive in Frisco. I didn’t die. The sun was out. I was feeling hopeful. I was all excited to write my next blog post about all of the wonderful warm and fuzzy feelings I was having. All my thoughts on how good days are great, but are also hard days, albeit in a different way. You forget about the bad days. You think geez, what was all that fuss about and why am I even doing all of this? I’m fine. The over analysis begins again about the severity of my condition and my plan.
Then I got busy with work and didn’t have a chance to get those thoughts down in my blog. Then I had a bad day. And guess what? They suck, too. Thanks for the reminder, in case I was worried about my good days influencing my plan forward too much. The evening of night 3 post infusion my left foot all the way up through my left mid-back is burning. I’m in pain and it feels like an itch I cannot scratch. I don’t sleep much because of the Neuropathic pain I am feeling physically. My mind won’t stop trying to figure out what the trigger was, and did I do it to myself? Was it worth it to have that glass of wine with my Valentine’s day dinner? I’ve been here before, pleading with myself. Telling myself and whatever is out there for Gods and Universes that I will stop doing whatever it is that triggers this, just please, make it stop. Is this permanent? Is the medication not working? This sensation is only on one side of my body, is it an early sign of PML like all the pamphlets say? I stress and then I get hot flashes. The hot flashes make me stress more and the sleepless cycle begins. I finally get out of bed and see if a couple of Ibuprofen will take the edge off. It’s nerve pain, not a sore muscle and I know I’m just trying to treat the symptom not the cause, but I just. Want. To sleep.
So how am I feeling today? Not great. But not my worst. My leg still hurts, thankfully a bit less than last night, and the skin up my left side is super sensitive to touch. I’m tired and cranky. I miss my happy hopeful self. But I know that part of me is just not showing itself right now. I do have faith that I will be okay. How I am feeling right now is just temporary. It always is. Stay tuned and I will let you know how it all unfolds. I’ve got another injection two weeks from the first one, and then after that hopefully every six months. A follow up MRI in April may show no evidence of disease activity. Fingers crossed!