Infusion Day: 6 months - 600Mg Ocrelizumab

I got to the Neurologist's office around 8:15am, and did an array of tests to start out the morning. Pretty much the same routine as the last 2 infusions, except for the fact that they deliver the entire dose of 600mg in one day, versus having them split up like the first dose. Eye test, physical from the doctor, EDSS scoring which included the walking test. I was over 3 minutes slower than last time. I had to fill out a questionnaire and do a couple of blood sugar tests. They take your blood pressure, pulse and temperature for some baselines. After all the initial tests, they start an IV and give you 100mg of solu-medrol which is the brand name fo the Methylprednisolone streroid. Then they give you some Tylenol and some Benadryl. There is about a 30 minute waiting period and then they start the Ocrelizumab infusion, which started around 11:30am. During the start of the infusion, they take the blood pressure, pulse, and temperature every 15 minutes to ensure that everything is ok.

Weight: 252
EDSS Score: 4.5

MRI Results: Blind report, no acute findings and nothing new to report.

 

Volume and Rates at which the drug is administered:

20ml - 30 minutes - 40ml/hr
42.5ml - 29 minutes - 85ml/hr
65ml - 29 minutes - 134ml/hr
84.5ml - 29 minutes - 169ml/hr
100ml - 94 minutes - 200ml/hr

Vitals throughout the day:

Time	Blood Pressure	Pulse	Temp
10:30 AM	123/79	76	98.8
11:00 AM	119 / 77	70	98.5
11:30 AM*	128/74	70	98.4
	120/75	70	98.4
	129/74	68	98.2
	115/72	71	98.5
	119/78	82	98.9
	126/68	85	98.9
	119/77	82	98.9
	121/72	88	98.9
3:44 PM	121/74	86	98.8
	134/76	89	98.8
4:30 PM	119/79	89	98.7
	Average:	78.9	98.67

The infusion finished around 3:30pm.  Temperature remained pretty steady all day with an average of 98.67 degrees.  The average pulse for the day was 78.9.  They did give me a naproxen equivalent to taking 2 Aleve as a preventative measure.  They checked the vitals a few more times and was able to "walk" out the door at 4:35pm.  I was at the office for a little more than 8 hours total, with 4 hours getting the infusion.

Not sure if I mentioned this before, but they recommend that you drink lots of water before getting the infusion.  I started upping my water intake a few days ago, but also chugged a huge water bottle this morning before everything started.  Because of this, you have to bring the trolley and pump that is giving you the drug with you when you visit the restroom.  Somewhat awkward, but better than the alternative.  No, they do not go into the restroom with you, but they do stand guard outside the door!

Next infusion is June 22nd!

What EDSS?

Someone asked me yesterday what my EDSS score meant.  My score since being diagnosed 2 years ago has gone from 2.0 to 4.0.  Very hopeful that Ocrelizumab will stop that progression.

Expanded Disability Status Scale (EDSS)

Score	Description
1.0	No disability, minimal signs in one FS
1.5	No disability, minimal signs in more than one FS
2.0	Minimal disability in one FS
2.5	Mild disability in one FS or minimal disability in two FS
3.0	Moderate disability in one FS, or mild disability in three or four FS. No impairment to walking
3.5	Moderate disability in one FS and more than minimal disability in several others. No impairment to walking
4.0	Significant disability but self-sufficient and up and about some 12 hours a day. Able to walk without aid or rest for 500m
4.5	Significant disability but up and about much of the day, able to work a full day, may otherwise have some limitation of full activity or require minimal assistance. Able to walk without aid or rest for 300m
5.0	Disability severe enough to impair full daily activities and ability to work a full day without special provisions. Able to walk without aid or rest for 200m
5.5	Disability severe enough to preclude full daily activities. Able to walk without aid or rest for 100m
6.0	Requires a walking aid - cane, crutch, etc - to walk about 100m with or without resting
6.5	Requires two walking aids - pair of canes, crutches, etc - to walk about 20m without resting
7.0	Unable to walk beyond approximately 5m even with aid. Essentially restricted to wheelchair; though wheels self in standard wheelchair and transfers alone. Up and about in wheelchair some 12 hours a day
7.5	Unable to take more than a few steps. Restricted to wheelchair and may need aid in transfering. Can wheel self but can not carry on in standard wheelchair for a full day and may require a motorised wheelchair
8.0	Essentially restricted to bed or chair or pushed in wheelchair. May be out of bed itself much of the day. Retains many self-care functions. Generally has effective use of arms
8.5	Essentially restricted to bed much of day. Has some effective use of arms retains some self care functions
9.0	Confined to bed. Can still communicate and eat
9.5	Confined to bed and totally dependent. Unable to communicate effectively or eat/swallow
10.0	Death due to MS

My First Ocrelizumab Infusion!

Today is the day!  I started out by having a conversation with the Neurologist and physical exam.  This office currently has 7 people on this drug, but everyone else is part of the original OPERA trials.  I am patient number 1 on the CHORDS study for this office, which is from a company called Genentech with a Protocol number of MN30035.  They have 3 others that are queued up behind me.  My doctor told me that this drug should deplete my B Cells, but has an added effect of stimulating stem cell regeneration.  Those stem cells are thought to then have the positive effect of reducing the lesions that cause MS.  He said that if my condition doesn't get any worse, then this is a success.  If it gets better, then it is a grand slam.  I've waited over 7 months to get this drug, and my optimism is high.  Here is the purpose of the study:

This study will evaluate the efficacy and safety of ocrelizumab in participants with RRMS who have had a suboptimal response to an adequate course of DMT. Participants will receive ocrelizumab as an initial dose of two 300-milligram (mg) intravenous (IV) infusions (600 mg total) separated by 14 days followed by one 600-mg IV infusion every 24 weeks for the study duration. Anticipated time on study treatment is 96 weeks.

Initial Vitals:

• Weight 252.6  
• Initial Blood pressure 124/79
• My EDSS score today is 4.0.

Started out taking 50mg Benadryl and 500mg Tylenol, followed by a 100mg Solu-Medrol (Methylprenisolone) steroid infusion.  I did not  initially get sleepy from the Benedryl, and didn't really notice anything with the steroid drip either.  In the last 30 minutes of the Ocrelizumab infusion, I did doze off for a few minutes and did have some minor spasms in my left leg.

The Ocrelizumab on the first visit is administered over a period of 2.5 hours, for a total of 300mg.
It is sensitive to light, so the drug is covered.  They change the flow rate of the drug 5 times, with the volume increasing with each level until the 300mg is gone.

Volume	Minutes	Rate
16ml	30	32ml/hr
32.5ml	29	65ml/hr
48.5ml	29	97ml/hr
64.5ml	29	129ml/hr
97ml	29	194ml/hr

My body temperature was normal all day, and didn't spike at all.  My blood pressure did drop for the first few readings, but then came up.

• 122/73
• 119/77
• 113/75
• 100/69
• 123/73
• 135/74
• 140/76
• 134/72
• 123/74
• 113/73

I did have them check to see my EDSS scores from the previous Gileyna trial I was on.  In July of 2014, it was 2.0.  In July of 2015, it was 2.5.  So, a 4.0 shows that I am deteriorating.  I'm anxious to see if this number remains stable, or gets better!

During the infusion process, if you have to go to the bathroom, they have you bring the infusion trolley with you.  I brought lunch, and tons of things to do, but spend most of my time online on my iPad writing this post.  After the infusion is complete, they have you sit around for an hour to ensure there are no problems.  I did not have any side effects from the infusion.  My body temp stayed stable, and I didn't get any rashes.  I was able to drive myself home without incident.  I go back in 2 weeks for the 2nd 300mg.