20/05/2017
How is everyone this weekend?
The MS community is all abuzz about the new treatment options!
Here is one patients first few days on the latest drug to be approved by the FDA, Ocrevus. This is said to by an option for those taking Tysabri that test positive for the JC Virus.
" I recently had my first treatment for Ocrevus (Ocrelizumab). I thought I would share my first few days with you. I was previously on Tysabri, for 8 years (91 infusions) but I am JC+, Tysabri was great and I support it and have nothing bad to say about it at all :). Here is my experience with Ocrevus (feel free to ask me any questions and I will try my best to answer questions for you)
Day 0 (Infusion Day)
I am patient 3 at the Infusion Center (University of Miami Sylvester Comprehensive Cancer Center) to receive the FDA approved Ocrevus. They participated in the Trial of Ocrelizumab, however, so I am not the third patient to receive the medication.
I went through a process of being referred for the drug by my neurologist, then agreed by my GP. I submitted paperwork (super easy to fill out). Insurance approved. I had blood tests done to test me for Hep B, Active Tuberculosis and to look at my Comp Blood and my Metabolic Blood. All my levels were good – so I was approved – and ready to go!
I arrive at the infusion center and get settled in like I would for my other infusion treatment. That treatment would normally take about 1.5 hours total. Something is wrong with my paperwork, so I wait for about 1.5 hours for that to get sorted. A first time, getting started glitch….understandable 😊. My blood pressure is quite low, which is normal for me, so in this wait time, my superstar nurse gives me some fluid to see if that helps with my BP.
Once sorted, we get started. (YAY!). My Blood Pressure has come up to my normal range.
First, I take a Benadryl capsule given to me by the nurse. She then starts a small dose of steroids through my IV. Neither of these affect me in anyway. I don’t feel them nor do they make me tired or achy.
Finally, about an hour later, she starts the Ocrevus dose. This is a ½ dose since it is my first treatment. I don’t feel anything from this while at the infusion center….no tiredness, no aches, no pains. The bag is marked chemotherapy. I ask normal chemotherapy questions. Will my hair fall out….what precautions do I need to take? My nurse assures me that all my research is correct. My hair will not fall out and that I need to take normal precautions. Eat healthy, stay away from people with colds and flus, and those that are sick and all will be fine.
I arrived at 7:45am and I left about 2:30 (might be off a little with when I left). Once the infusion was done, I stayed to be monitored by the nurse for one hour. (mandatory monitoring).
Later in the day, about 5:30 or 6:00 I was tired. Really tired!
Day 1 (Tuesday)
The day after infusion.
I woke up expecting to have a headache. I’ve read everywhere that headaches are normal. With my other infusion medication – after the first treatment, I had the WORST headache I’ve ever had in my entire life. With Ocrevus – NO HEADACHE. I slept until 11:30. That’s not normal for me. I usually wake up early. I forced myself out of bed….and I felt very empty on energy – not fatigued…just empty on energy.
I rested this day.
Day 2 (Wednesday)
I woke up early.
Still feeling a little empty for energy. But I’m not in any pain. I’m able to go to work. I work from 8am – 3pm and then work from home for a few hours.
Day 3 (Thursday)
Incredible Day! I had zero pain…and while my energy level was still not 100%. I was able to tolerate heat and feel the heat without “melting”. I was able to walk 3X what I would walk on a good day normally and still had energy at the end of the day.
Day 4 (Friday)
Still Feel Great. No pain. Energy levels are at “my 100%” and growing. I am still able to tolerate heat. I am regaining sensations of heat and not melting. ( I live in a very hot place where the temperatures average 85 degrees or higher year round.)
Day 5 (Saturday)
Woke up still feeling great full of energy. Today’s plans include running errands, with several stops including the grocery store and party store. Pain levels are remaining practically gone. I have no spasticity and no sticking or tingling pains. I expected this type of results during months 3-6 (more during the second treatment). I don’t know if these results will last or not? I will keep you posted!"
