The days leading up to my introduction to my first disease modifying drug were filled with stress and worries. This MS (multiple sclerosis) stuff was finally becoming real. Up until this point it had been an abstract theory I wasn’t fully dealing with or addressing. I had dealt with the symptoms, the diagnosis, the fear of the future, and grief of my life before. I had not yet dealt with the reality of moving forward, maintenance, medication, and the risks involved. It actually sprung me into action. I stumbled upon Overcoming MS (based on the Swank diet for autoimmune diseases) and was reading about lifestyle changes that I could work on to help ease my symptoms and hopefully deter any increase in the disease. I have started a vegan+fish diet, loaded up on every flax seed product available, tweaked my vitamins and supplements, and joined a gym. Do I have doubts sometimes its all hype? Yes but it can’t hurt. It has to improve my health on some level. It’s something I can do right now, and if all else fails it will have a positive effect on my mental health – stress is half the battle. So I am slowly changing my habits and adjusting to my new lifestyle. After some time it wont be so much work and it will come more naturally.
Ocrevus is a disease modifying drug for multiple sclerosis. Multiple sclerosis is an autoimmune disorder of the central nervous system (spine, brain, and eyes). Instead of fighting infections, some B and T cells attack the myelin or fatty layer protecting the nerves in the CNS, similar to exposed wires. This causes disruptions in the messages carried by these nerves that can cause strange sensations, muscle spasms, muscle pain, numbness, disability, and blindness. Ocrevus targets certain types of B cells, but the exact way it works is not known. Ocrevus is administered once every 6 months for 5 hours. The visit also requires you sit for an hour before and after to prepare for and monitor any allergic reactions. The first dose is broken up into two 2.5 hour visits 2 weeks apart.
When I arrived at the MS center I was wearing jeans and a t shirt, I brought my kufiya as a shawl in case I got cold, my laptop, and a couple of books. I had planned on writing, reading, and enjoying some quality me time. My husband came with me and stayed, he was able to bring his work with him. There were about 6 hospital style recliners in the infusion room, all with a personal TV. Within about 2 hours of arriving every seat was taken. The nurses were nice and offered pillows and heated blankets. Before starting my Ocrevus infusion I had to take Benadryl, Tylenol, and IV Solumedrol (a steroid) to anticipate any allergic reactions. When I was finally ready to start the Ocrevus, the Benadryl started to kick in. I was nauseous, groggy, tired, and out of it. I was frustrated because I had planned on using my brain and I could barely think let alone use my right arm which I had to keep straight for my IV. I was able to scroll a little on my phone, but I mostly watched TV. I didn’t really notice any major reactions from the Ocrevus. My scalp and ears slowly became more and more itchy, and then one of he nurses noticed a slightly reddish rash on my cheek. I told her about my scalp and ears and she had to give me more Benadryl. I tried to downplay the itching because I really hated the effects from the Benadryl but apparently that is one of the allergic reactions to look for, so I had to take more. Once again I was groggy, bored, and dozing in and out of a drug induced sleep. Not relaxing really. Luckily my first half dose of Ocrevus was fairly boring and uneventful, and I am thankful for that. When I came home I was mostly exhausted from the being in the MS Center all day and dozing off from all the Benadryl. By the next day I felt fine. A week after I still feel fine.
For my second visit I was more prepared for what to expect. I wore more comfortable clothes since I knew I would be sleeping for most of the day. I didn’t bring books or a laptop, just some earbuds in case I wanted to listen to music on my phone (which I didn’t). I wore comfortable leggings, a loose tee, a large comfy sweatshirt, and socks with slip-on sandals. I also wore my new hat, from Wear The Peace. They donate 100% of their profits from hats and accessories to Helping Hands for Relief and Development and Palestine Children’s Relief Fund. It was cold in the infusion room for the first visit. The sandals were helpful for going to the bathroom, especially when you have to drag the IV with you. I find it hard to move around with the needle in my arm being covered in tape as it slowly rips out all my little arm hairs. The feeling actually grosses me out. I also had to keep my arm straight so one of my arms was pretty much useless resting on a pillow. The second visit I was also less reactive to the medications. The Benadryl still made me sleepy and I dozed off here and there but I wasn’t as groggy and out of it. I also had less of an allergic reaction to the Ocrevus, no itching, just a faint rash on my face this time, so I didn’t have to get the second dose of Benadryl which I was happy about. I was still nervous and anxious as I headed over there but all in all it was a fairly boring procedure. Boring is good as far as I’m concerned.
I feel somewhat accomplished to have gotten over this hurdle. My first disease modifying medication to treat my new diagnosis of multiple sclerosis. Two 5 hour long visits hooked up to an IV. Now I don’t have to go back for 6 months. The next visit will be the full dose, so the infusion with be 5 hours long with and extra hour before and after for monitoring. That’s a long day, but I am much more comfortable with the procedure. For such a major drug the side effects are little to none and the maintenance is minimal. I am so relieved. I was on interferon 10 years ago to treat Hepatitis C and it was more of a daily life consuming experience of pills, injections, and emotional and physical side effects for an entire year. Going through this first part of Ocrevus is reassuring that living with MS will be manageable. I definitely recommend this drug therapy for the treatment of MS.