Excerpt from my third infusion -
March 25th 2013 – Had my infusion today. This is the third infusion and with the increase to 600 mgs. Blood pressure and pulse were elevated throughout my time there and they seemed to increase slightly. The hardest part about this process is sitting for so long (7:45 am - 4:30 pm). Receiving the 25 mgs of Benedryl makes me want to sleep within minutes of the injection, but I am afraid of snoring in front of the others in the room so I do not sleep. The increase in my blood pressure (130/93) and pulse rate (pulse was as high as 104) makes me think that the placebo is the Rebiff and that I am really getting the Ocrelizumab. There are no side effects from the Rebiff injections and none since starting the injections in October 2012. Prior to leaving the office It was reported that the lesions have decreased in size in my brain based on the results of the MRI (and compared to the results from the MRI in September 2012). I did take my Rebiff injection once I got home, around 5:30 or 6:00 pm. I was sore with leg and ankle cramps and had a hard time falling asleep even though I felt physically and mentally exhausted. The cramps were more on the left side of my body and concentrated on the hip, lower leg and ankle. I did take 600 mgs of Ibuprofen with no real relief. Eventually my exhaustion overcame me and I slept. Physically I continue to struggle with fatigue and sometimes this is pretty extreme. I am able to work with no problems and 12 ounces of coffee in the morning does help. Once I get home from work, around 5:00 pm all I want to do is lay down in bed. If I do, I could sleep for hours. So, normally, the bedroom is avoided until bed time. There are no real issues with standing or walking. I still can walk miles, but getting back on my mountain bike seems futile. Sometimes I get fatigued when doing something repetitively ie pedaling a bicycle or even putting lotion on my arms. There are some continued problems with dizziness. I was prescribed Amitryptaline 20 mgs which helped in the beginning, but the dizziness has come back. This is mainly when I am attempting to lay down or looking straight up. For the time being, it is something that is tolerable. Lastly, my memory seems to be poor. The best way to describe this is “out of sight, out of mind”. If I am not looking right at something such as my cell phone, my cup of coffee, my vitamins etc, they are easily forgotten. Even writing something down is of no use, because I forget to look at what I have written.