Final Infusion on CHORDS Trial

This is my 5th infusion today if you count the 1st two half doses. I've been on this medication for a year and a half, and will need to go in for some final MRI and blood tests within the next 6 months. I have applied to continue taking Ocrevus with my insurance company, but am skeptical on the results that I have seen so far. I will wait until after those final MRI images come back before making any decisions to change. Here is how my last infusion went.

Weight: 252

Initial Blood Pressure:  120/74

Initial Temp: 98 degrees

Initial Blood Sugar: 85

EDSS Score: 4.5

11:40 Start IV

12:45-12:00pm - Solumedrol

12:03 - Blood Sugar 106

12:04 - Premeds

12:30   Temp 97.9 / BP 126/82 - Pulse 78

12:45   Temp 98.1 / BP 137/78 - Pulse 77

13:00   Temp 98.1 / BP 128/82 - Pulse 81

13:15   Temp 98 / BP 126/84 - Pulse 78

13:30   Temp 97.5 / BP 121/73 - Pulse 85

14:00   Temp 98.3 / BP 125/79 - Pulse 83

14:30   Temp 98.7 / BP 127/84 - Pulse 88

14:45   Naxopren

15:00   Temp 98 / BP 122/71 - Pulse 89

15:30   Temp 98.4 / BP 121/83 -  Pulse 84

16:00   Temp 98.3 / BP 126/82 - Pulse 88

16:30   Temp 98.2 / BP 127/81 - Pulse 84

17:00   Temp 98.2 / BP 137/83 -  Pulse 90

17:30   Temp 98.5 / BP 130/78 - Pulse 85

18:00   Temp 98.4 / BP 139/82 - Pulse 85

Here is a picture of the infusion rates: 

I was able to drive myself to and from the infusion without issue. Although I don't feel like the disease is not progressing, my EDSS score did go down from 6 to 4.5. Not sure how this happened, since I wasn't able to finish the walking porting of the test.  I slept for about an hour total during this infusion, but spend the rest of the time on my ipad either working or surfing the net. No side effects at all during this infusion.

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!

Five Months Post Infusion

I went in today to get another MRI, as well as blood and urine tests before my next infusion.  While I was at the office, I also needed to sign a new consent form for the CHORDS study, as they've made some minor changes. My next infusion is January 9th, and I'm excited to continue on the study, but am somewhat skeptical at this point on how effective it is for me personally. I have had a rough month or two, and my conditions seem to be deteriorating. My overall symptoms have gotten worse, but I remain optimistic that this drug will do what it's supposed to do in the long run. I was in South Carolina with family over the holidays, so the change in weather was great. Now, I'm back in Wisconsin and had a challenging MS day today. Good news is that I have a 3 day weekend coming up to relax and watch some football.

So, I found out today that roughly 294 out of the 600 participants in the CHORDS trial have already received the drug. Apparently, there was a high number of people getting declined for the study, so they have loosened the requirements to get into the trial. Nothing changes for me regarding the study and how I get the drug, but new people into the study will not have as much difficulty. From my understanding, they will not do as many blood tests, and/or make some modifications to the ones they do do. They have also changed their stance on reproduction for men, as they were pretty clear that you were not to try for kids while on this drug. This has changed for Men, and they only ask now that if you do try and get pregnant with your partner, that they are notified and have a chance to monitor that.

On a side note, the WalkAide device that I was using stopped working about 2 weeks into testing it. Not sure if going to a different part of the country affected that, but I wasn't able to get a full month of usage, and am not sure if I'll try to buy one. I did see that people are selling used units online, and this may be a more economical way to get one.

Schedule

It will be a while before my next infusion, so I thought I would at least post the schedule for the different tests that are required along the way during the trial. There is obviously a little wiggle room, plus or minus a certain number of days in this schedule.  It's only meant to show what happens when.

Reduction in lesions?

I have read through enough articles about Ocrelizumab to get excited just due to the possibility of reducing the number of brain lesions. In the phase II study, 220 people with relapsing remitting multiple sclerosis had reductions in the total number of brain lesions detected by MRI scans with 96 percent of people who had the 2,000mg dosage and 89 percent who had the 600mg dosage, compared to placebo. Additionally, the annualized relapse rate was reduced by 80 percent compared to placebo for those on the 600mg dosage.  (73% for the 2,000mg)

Just the idea of being able to reduce the number of lesions, or stopping new ones from forming is exciting. I realize that this is still a long journey for me, and I may not see results, if any, for a while.  I tell people that I'm cautiously optimistic, and that I feel lucky that I get to participate in this study.  On the MS SubReddit, I had questions on how I was able to get involved with Ocrelizumab.  Honestly, I was proactive and asked my Neurologist, and said that I really wanted this drug. We went down the path of getting approved for Lemtrada as an alternative while waiting for this opportunity, but I'm glad that I was accepted to the study. I am patient number one for this specific research facility, and I know that there are 2 more queued right behind me. Less than a week away until I get started.