Thursday I experienced the first half dose of my new MS medication, Ocrevus, aka ocrelizumab (#5 of the DMDs, as you’ll recall from my previous post). I will receive the other half dose later this month, but so far I am encouraged by what I have experienced! I had joined a couple Ocrevus support/information groups on Facebook prior to the infusion so I could ask other MSers what advice they might have for me prior to my first half dose. I also took that opportunity to ask if others were also allergic to Tysabri but maybe had success with the Ocrevus, as they are of the same drug class and I wanted to know if I should look out for any possible allergic reactions other than the chest pressure and inability to take in full breaths, as I had dealt with following my five months of Tysabri back in 2010.
I am forever grateful of the few group members who assured me that they were able to tolerate Ocrevus much better than Tysabri, especially the woman who explained that there were things that could be done to counter some of the common side effects known to occur during infusion. Some of the things she offered that my nurses would/could assist with included: slowing the rate of infusion, administering more corticosteroids and/or antihistamines if allergic reactions occurred, and she also informed me that I would receive steroids and an antihistamine prior to the start of the Ocrevus infusion.
Since I was armed with all of this knowledge ahead of Thursday’s appointment, I felt fully prepared for what I would encounter when I arrived at the infusion center. I woke up an hour before my ride would arrive to bring me to the infusion center and promptly packed a bag of necessities: my laptop, tablet, cell phone, and chargers; a book, in case I got bored of blogging and Facebooking; snacks, since I knew I would be going hours without eating after breakfast; socks, in case the infusion center was as cold as normal; and extra water and Wild Cherry Pepsi to drink. Along with the snacks, I had made sure to have along hard candies to suck on so I didn’t have to worry about any “pennies in my mouth” taste that comes from the infusions of corticosteroids. I brought Werther’s Originals & Jolly Ranchers, my favorites for any time I have had to endure that awful metallic taste, which any MSer could tell you is dreadful (in fact, every time we have yet another flare-up of MS, we “get” to suffer through more steroid therapy and I will be the first to tell you I am thankful I learned that little tidbit early on in my diagnosis!)
My nurse of the day, D, has always been a pleasure to work with, but I was not a fan of the other nurse (who we’ll call “Nurse Drill Sergeant,” mostly because I couldn’t remember her name, and also because I didn’t appreciate her having to take over a few times when D was helping someone else or off getting lunches or supplies or whatnot; I’ll explain more in a moment about Nurse Drill Sergeant). Once I chose my recliner for the day, D gathered her necessary supplies to start my pre-medications and let me get myself situated with my things. She informed me that after she gave me the Solumedrol (the corticosteroid) and Benadryl injections, I would start an hour of observation time, so I would have plenty of time to start blogging and Facebooking. That first hour seemed to fly by and soon D was back to start my Ocrevus infusion.
A little while into the infusion process, I began to notice my throat was feeling a little scratchy and more mucus-y than normal and I constantly felt the need to clear my throat, though there was nothing actually in it. I had developed a headache as well and I reported all of the side effects to D who promptly stopped the Ocrevus and armed herself with another shot of corticosteroid (SoluCortef this time) to inject into my bloodstream in an effort to alleviate the side effects. D informed me that the timing of my reaction was pretty on par for any MS patient when first starting Ocrevus, which immediately relieved any worry that may have begun to develop in my mind. She joked that she could almost start a timer for the reaction to occur at right about the 2 hour mark, and I don’t doubt that, given D’s knowledge in her field! Once the SoluCortef took effect, I was able to resume the infusion but this time she instructed Nurse Drill Sergeant to lower the rate of the liquid in order to (hopefully) prevent further reactions from happening.
Throughout the entire process, I had to have my blood pressure and other vital signs checked at regular intervals, but I became quite irritated when Nurse Drill Sergeant made me turn off all of my electronics – tablet, laptop, AND cell phone – because she was concerned that it was causing my increased blood pressure reading (around 140/80). She actually left my curtained quarters to quickly return with a folded up piece of fabric which she wrapped around my head, covering my eyes, and insisted that I lie back on the recliner with my eyes closed and do nothing else because she was so convinced that I was somehow stressed by my electronics!
(Ok, I may not have a degree in nursing, but what I do have is over eleven years of experience in dealing with the unfortunate consequences of how my body reacts to certain medications used to treat MS, especially corticosteroids!! I can assure you that a slight rise in blood pressure is typical, especially with SoluMedrol, SoluCortef, and Prednisone!!! How a nurse in a very busy neurological infusion center didn’t even think about that possibility is beyond me, especially after I heard D inform Nurse Drill Sergeant that she had to give an additional 250mg of corticosteroids!!)
Anyway, as soon as Nurse Drill Sergeant left my area and I heard the curtain close behind her, I removed the fabric from my eyes; I knew I wasn’t going to be able to lie there with eyes closed for very long, especially after my 12-hour sleep the night before! I left my laptop on the table next to me (in case she returned to me before D could) and simply got my tablet out and proceeded to play my games instead. Forgive me, Lord, but I’m not going to listen to a nurse (who wasn’t even assigned to me that day) tell me that my blogging, Facebooking, and game playing are causing a higher blood pressure instead of the obvious (and more likely) reason, which also happens to be “like clockwork” for me for every single flare-up I have had to endure days of high doses of SoluMedrol in order to treat those exacerbations (and those infusions are typically followed by a Prednisone taper, so I’m used to this temporary higher blood pressure).
I was grateful when it was Nurse Drill Sergeant’s turn to step out to have her lunch because I was able to talk more to D about my blood pressure and found out that she agreed with my assessment, because this was also the first elevated reading they had taken on me all day thus far! (D also assured me I could return to my laptop if I wanted; though by that time I was getting so close to the end of the infusion that I just played games the rest of my time there). I am looking forward to hopefully having D for my nurse on Tuesday, May 26 when I go back for the other half-dose because if I am somehow assigned to Nurse Drill Sergeant for that appointment, I will have a difficult time keeping my mouth shut if she attempts to stop my calm, happy blogging and Facebooking again! (I suspect I will have D again, though, since my new neurologist and D are both based out of the office that is much closer to my home – the one that had been temporarily closed due to COVID-19.)
Once the remaining Ocrevus had dripped its way into my bloodstream, D returned to unhook me from the needle and give me my after-care instructions, complete with the phone number to reach the on-call doctor in case any subsequent side effects showed up at home, which was a possibility for up to 24 hours after treatment. I had apparently timed my call to my ride perfectly, as he pulled up to the entrance just minutes after I had stepped outside! (Thanks again, F!)
One thing was for sure from what D had told me I may expect – I was wiped out! I couldn’t believe that I had almost zero energy once I got home, even though I had an (overly) full night’s sleep the night before, which probably only occurred because I had spent Wednesday evening hiking down to “Fern Gully.”
Time for another aside: Fern Gully is my term of endearment for a particular portion of my family’s land that is tucked back behind the farmland, past the tree line and can only be accessed by descending the steep hill to the bottom of the valley that sits on the south end of my late paternal grandfather’s land and connects to distant relatives’ farmlands. I affectionately call it “Fern Gully” because, well, I loved that animated movie as a kid and because there is a fairly large patch of ferns growing down at the bottom of the hill, in the cool, cozy shade of all the oak and boxelder trees that grow around the property. Even on my healthiest days, the hike down to Fern Gully is enough to bring my energy level down to a snail’s crawl, so I typically sit in the grass on the edge of the plowed fields once I have successfully made it back up the hill, before I trek my tired ass back to my parents’ house on the north end of the property, much closer to the highway. From the top of the hill back to the house is approximately three-quarters of a mile, so I’m typically ready for a nap by the time I make it home. Wednesday night, I was out like a light for the next 12 hours!
So, imagine my surprise when I felt exhausted once again following my infusion, even though all I had done Thursday was sit in a comfortable reclining chair and receive my first half-dose of medication to suppress my immune system and slow the progression of the multiple sclerosis that has had a long time to wreak havoc on my brain and spinal cord already. I was fortunately able to keep myself awake until it was a more opportune time to sleep than the middle of the afternoon, but a couple hours after my ride dropped me off at home, I had begun to feel the tightness return to my upper chest and throat. I was grateful when my oldest nephew, L, stopped by with his girlfriend to drop off the Benadryl I requested, and less than an hour after I had taken it, the side effects disappeared. I have had no other side effects since, so I will call MS DMD #5 a success thus far! My hope that I find an effective disease-modifying drug to ward off Bertha may finally be a reality (fingers crossed)!!
Please send prayers for my continued success, because I cannot let Bertha win this war! I am tougher and much more stubborn. *wink*