My Experience with Ocrevus – first 2 weeks

My first infusion of 300 mg was on August 8th. I had been told the only difference between Ocrevus and Rituxan was human antibodies versus mouse antibodies. My body had absolutely no side effects with Rituxan so I wasn’t prepared for the things that followed that infusion day.

The process after checking in at the infusion center was a standard protocol at this facility for Ocrevus. A nurse came and got me and I picked the chair I wanted to sit for the next 4-6 hours. We confirmed who I was and took my vitals. The nurse swiftly disappeared to order my first 300 mg of the medication that’s hopefully going to keep my MS at Bay a bit longer.

When she returned a needle was placed in the vein in an arm of my choice. Saline was pushed, I was given 650 mg of Tylenol to swallow, 50 mg of Benadryl was pushed into the vein followed by 125 mg of steroids. Then I’m left, warm blanket, water to wait for the bag of medicine. About 30 minutes within my arrival the Ocrevus was attached.

About an hour into the infusion I started getting itchy. It didn’t occur to me that anything was wrong at that point. The itchiness spread to my entire body and more intense. I notified the nurse and the medication was paused. This is how my allergic reaction started. I was given options, first was pushing 25 Mg more of Benadryl, I was able to get additional 25 on top of that, pepcid and steroids if needed. I decided to take the additional Benadryl and push through the rest of the infusion.

Every 60 minutes my vitals were checked, monitoring blood pressure and temperature. The Benadryl was making me sleepy, which never happens with the pills. Dozing in and out while reading a book. The machine beeps at times intervals, alerting the nurse they can increase the dosage per hour flowing into my vein.

On the way home I got very nauseated, by the time I got home I had a fever and headache. I checked the site for the manufacturer, these things were normal and should only last 24 hours. Ok, I thought I can do this. I even went to my second graders event to meet his new teacher and drop off supplies. I’m sure I looked contagious with my cold sweat inducing fever, body aches and queezy stomach.

The body aches lasted days, not hours. The fever lasted a week, not hours and the headache lasted two days, not hours.

The whole time I felt terrible I could only hope these things would pass prior to my next infusion. Hold on to hope this medication would stop my MS.

August 22nd (today) was my second infusion. I told my nurse that the fever lasted a week. Apparently this happens, though not to everyone she has had a couple of patients that have a fever for a week. She also noted that the steroids made my face red, though faster than any of her previous patients.

Per the drug website, most people who have a reaction with the first should have less or no reactions from future infusions.

An hour into my second infusion I once again began to feel itchiness. This time I spoke up right away and I was given pepcid.

When the infusion part was done and I was in my “watch period ” is when I broke out into a cold sweat and headache. So far, the symptoms are the same as last time. I have a friend who tells me the third infusion in 6 months should be better (fingers crossed)

Below are a list of “reactions” listed by the drug company. I decided to post my experience because I couldn’t find anyone that had my reactions after my first infusion. It’s frustrating to be a person who gets the “not common” reactions to medications, but I can’t be the only one. Hopefully this post will help someone like me.

  • itchy skin
  • rash
  • hives
  • tiredness
  • coughing or wheezing
  • trouble breathing
  • throat irritation or pain
  • feeling faint
  • fever
  • redness on your face (flushing)
  • nausea
  • headache
  • swelling of the throat
  • dizziness
  • shortness of breath
  • fatigue
  • fast heart beat

Mental Health – In The Beginning

This week, as I wean off one anti-depressant so I can start another I find myself thinking about mental health more.

This is a hard subject for me, which if you’ve read my other posts that are full of personal information, you’re probably wondering why.

This will be my next series of posts, there is far too much to tackle to fit it all into one blog post.

I’ll start by sharing that one of my close friends completed suicide the summer before my freshman year of high school. It made know sense to me, we talked nearly every day on the phone that summer. He was in the ICU for some time before finally passing. While his pain was gone, my pain and confusion was just ramping up.

That summer I had also been passing out and having seizures which required a lot of tested and many medical appointments. So here I am, a 13 year old girl, dealing with a death and possibility of a pace maker in the same summer before entering my fist year of high school. One of these things is stressful enough, I’m sure you can imagine the toll three of them plus pubescent hormones had.

I remember one day at school was too much for me. I started hyperventilating, I cannot remember if I actually passed out but I do know that EMTs came to my school and I was lying of the ground in front of my locker with an defibrillator device attached to my chest.

That is when we had to tell everyone that if I pass out there were specific steps to take to bring me back and not to call 911. Embarrassed and traumatized from this mortifying event I found a place to lay every time I got dizzy or anxious after that.

Next post I’ll discuss stigma with mental health.

Organizing Your Medical Records

Second in being your own advocate series.

So, what do you do now that you have all your medical documentation, reports and CDs? Everyone will have a preference on what works for them and the way their brain works. For me, I found that a binder works best. My binder is set up with dividers and only has the current year and the year previous, all other years are kept in tonged portfolio type folders and separated by year (in some cases one year may take two folders), I find this is easiest because you can keep them in a fire safe, filing cabinet or book case.

Binder Organization:

  • The first thing in my binder is a copy of my insurance card, this is handy if you want to take your binder to an appointment with you.
  • Secondly, I have a printed copy of my spreadsheet with my doctors information first and then all my medications. Keeping a current list of medications is helpful when you see the doctor, if you are on a lot of different ones like me it’s hard to remember the names and dosages of everything.
  • Third, I have a print out of my google calendar that shows my appointments. This is good to have a snapshot of your month but also if you are scheduling appointments you have a copy of your calendar in front of you. Yes, you can use your phone but sometimes it’s nice to have a printed copy, I color coordinate mine so one color is my medical appointments, one color is for my kids and a different color for the family.
  • For me personally number 4 is lab work, I have printed copies of all my blood test results. I do extra on this because I like looking at my blood work and seeing if it’s changing so I have a spreadsheet that has all of my lab results for 10 + years, anything that flags high is red and low is green. This makes doctors appointments faster when they are discussing previous labs. When doctors use their portals they have to pull them up one at a time, this way it’s all right there and we can see a snapshot of what the last few months were.
  • Fifth is blank sheets (or you can probably find forms) to make notes at appointments. On these I write the date, who the appointment is with, questions I want to ask at the appointment and then notes I take away from it.
  • After that I have all my radiology reports and other tests that I have had done (EKG, hearing, eyes). These are separated by binder dividers and then the previous year information in the same order is after that.
  • The last thing in the binder is CD copies of all of my imaging. Not only fun, if you have a computer and want to see your body but helpful when seeing a new doctor or following up with an appointment where the doctor may not have the images yet.

Let me know if you have any questions and I will happily address them if I can.