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.

Symptoms Worse, EDSS Better???

I have been tracking my symptoms since I started in the trial. I have made a few adjustments, as what I thought was bad last year, wasn't nearly what I anticipated.  Interestingly enough, even though I added additional issues to my EDSS interview, my score got better from a 4.5 to a 4.0. I know for a fact that my MS symptoms have gotten significantly worse in the last 6 months. The good news is that there are no new findings on the MRI.  However, my good and bad days have been pretty erratic. You can see from my tracking worksheet that I've had some pretty bad days. I'm not sure how long I'll need to wait to see if my situation gets worse, but I'm committed to finishing out the study for now.  Today, the day after the infusion was very challenging. After the 1st infusion, I rebounded pretty well due to the steroids.  Not today.  I really struggled, and even fell hard tripping at the gas station today.  I had my dad in town helping with yard work, and felt helpless that I couldn't do anything.  I love the help, but hate the feeling of helplessness and being a burden on anyone. Don't get me wrong, I love seeing the others who are helped by Ocrelizumab, and hope that I'm just a slow learner.  Now I wait for a few months to see how it progresses. 

EDSS Score: 4.0

4th Infusion: 2nd Full Dose after two 1/2 doses.

MRI & Blood Work

In one week, I'll go in for my 3rd infusion. Technically, it's my 4th infusion, but the 1st one is split up into 2 different sessions. I had my MRI today, along with the blood work in preparation for the infusion. I know that a lot of you are excited to try out this drug, and have read all the stories on how it's a miracle cure. Unfortunately, that has not been the case for me. My symptoms have progressed significantly in the past 6 months, and I'm not nearly as hopeful as I was going into the Ocrelizumab trial. The nurse at my neurologist's office said that acceptance to the trial I am on is now closed as of a few weeks ago. I will talk it over with my Doctor next week, and will probably give myself another 6 months on the drug before even talking about switching to something else. Although frustrating, I am still grateful that I was able to try this before it was even FDA approved.  Just wanted other users to know that each patient is different, and results may vary.

Ocrevus gets FDA Approval today!!!

Congratulations to all of the MS patients who have been patiently waiting for the approval of this drug in the US.  After a couple month delay, Ocrevus was approved by the FDA today.  It has been listed that patients may be able to get the drug as soon as 2 weeks.  Although I was lucky enough to get into a trial and get the drug early, it is comforting to know that it will be available as soon as the study is completed.  Now, the question is how much?

Links related to FDA Approval:

https://www.ocrevus.com/

• http://www.nbcnews.com/health/health-news/new-ms-drug-ocrevus-wins-fda-approval-n739776
• http://www.reuters.com/article/us-roche-ocrevus-idUSKBN170046
• http://www.businesswire.com/news/home/20170328006579/en/FDA-Approves-Genentech%E2%80%99s-OCREVUS%E2%84%A2-Ocrelizumab-Relapsing-Primary
• https://multiplesclerosisnewstoday.com/2017/03/28/fda-approves-ocrevus-as-1st-ms-treatment-for-both-relapsing-and-primary-progressive-forms/
• https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm549325.htm
• https://www.yahoo.com/news/fda-approves-1st-drug-aggressive-142931138.html

Links Since Approval:

• https://multiplesclerosisnewstoday.com/2017/04/20/ms-therapy-ocrevus-focus-first-data-update-aan-annual-meeting-fda-approval/
• https://multiplesclerosisnewstoday.com/2017/04/19/ocrevus-and-rituxan-and-differences-neurologists-respond-to-ms-patients-concerns/
• https://multiplesclerosisnewstoday.com/2017/04/18/5-ways-ocrevus-can-improve-life/
• https://multiplesclerosisnewstoday.com/2017/04/12/ocrevus-fact-sheet/

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.

Four Months Post Infusion

I've had a few rough days in the past couple of weeks, mostly due to trying to do things past my current limits. Overall, my symptoms are about the same from day to day, but do have spikes here and there. For example, the last week, I'd had issues with back pain, which is probably more related to the multiple back surgeries rather than MS. I've also been battling with fatigue again. Yesterday, I fell in the driveway trying to load up my car, and last Sunday tripped and fell after tripping over the hitch on my car. It's more damage to my ego, as I've never been this un-graceful before. I have a few bruises and scrapes that will now take much longer to heal than normal. I'm hoping that I can get through the next month without further degradation of my health. I am looking forward to the next infusion cycle.

I've made a couple of changes to my tracking spreadsheet. I've removed a couple of columns from the calculation of the graph that I've been posting. Knee pain was removed, as this was due to a specific incident where I fell down the stairs and spraining my knee. It is not a symptom of MS, but a result of it. I also removed back pain, as this is most certainly due to my back surgeries, not MS. I also removed typing, as this is redundant with the column of right fingers dexterity.  So now the average is a calculation of 17 categories versus the original 20. This may change in the future, as I'm starting to think I need to track a few new symptoms as well.

If I think about how I feel now compared to a year ago at this time, or even at the start of this study, I would say that my condition has worsened.  Although the tracking numbers show a slight improvement, I think that this may be slightly skewed due to the fact that I'm getting used to my issues.  I can still walk fine, but in limited distance depending on the day.  I can still go up and down stairs, but with effort.  I can still drum an play piano, but with limited speed on my right hand.  I've altered my driving, and usually use my right hand to help lift my right leg when needing to get to the gas pedal, and now brake exclusively with my left foot.  I've made adjustments, and given up on all of my previous sports hobbies like wakeboarding, snowboarding, and kiteboarding.  I've replaced them with activities that I can do in moderation, like photography.  Luckily, my dogs are older now and need less exercise than they used to, as I cannot walk or run them like in the past.  

I've dealt with a ton of stress in the past few months, which doesn't help the symptoms either. However, I've accepted the fact that only I can control how I view the future, and even in times where I started getting worried specifically about MS, I'm hopeful that Ocrelizumab will prevent the condition from getting worse and start to make it better. Even though the direction I thought I was headed has changed, I won't let MS be the driving force of that compass.

Three Months Post Infusion

I actually had a good MS day today.  I was at a conference this week, and did a ton of walking.  I believe that some of my recent improvements were due to steroid regimen, as I knew that I would be over exerting myself the entire week at the conference.  I did end up using my cane every day that I was there because of some extended walks.  I have a feeling that I will probably have some difficult days ahead as that is the normal pattern.  It is 3 months post infusion, and the trends on my chart look to be improving.  I'm not sure if I am scoring myself differently due to the fact that I'm just getting used to my symptoms, or if they are actually slightly improving.  I have had some difficult days, but overall I feel fairly stable.  I verified with my Neurologist today my next MRI, Blood test, and Infusion Schedule.  I hope to see continued improvement, or at least stabilization.

I also recently bought a fitness tracker.  I went with the Samsung Gear Fit 2, as I liked the color screen and features best with this model.  The goal was to start tracking my steps and sleeping habits.  I set a goal for myself to walk 4,000 steps each day, and have met that more than I thought I would.  It also has the ability to track heart rate, water intake, and connect to my smart phone for notifications.  I can tell that my legs muscles have weakened considerably, and atrophy is noticeable on my right leg.  My hope is that the fitness tracker will help motivate me to stay active, and increase my muscle strength in my legs.

As far as Ocrelizumab, I still have no idea if it is working or not.  I look forward to the results of the next MRI to see if there are any changes.  My improvements could be weather related, or just fluctuations in my symptoms.  I'll keep tracking my progress and check in next month.  :)

Two Months Post Infusion

It's been 2 months since my first infusion on Ocrevus.  I wish I have more to report, but there really isn't much to report as far as differences in my condition.  I understand that it may take an extended period of time to see any results.  Overall, I've had a decent month as far as symptoms, with good and bad days.  Recently, I went on a few days of Prednisone which had some dramatic effects on my walking and fatigue levels.  However, that is not a long term solution, so I expect my levels to go back up in the next few days.  The weather is finally cool here in Wisconsin, which should also help.  We had a hot summer, and it was challenging.  Still good buzz in the news about Ocrelizumab and seems like it's still on track for approval before the end of the year.  :) 

One Month Post Infusion

I thought that I would give a quick update one month after my first infusion of Ocrelizumab. Although there hasn't seemed to be any improvement in my condition, I haven't had any adverse side-effects due to the drug. Now it's my understanding that this could take up to a year to see any changes, so I wasn't really expecting anything to change this quickly. I also understand that there might not be any improvement.  The primary goal is to stop the progression of MS.  I still monitor my symptoms on a regular basis, and you can see there are still some ups and downs, but seems to be trending downward slightly.

These scores are not based on the EDSS model.  They are an average of all my major symptoms based upon a personal rating system as of that day.

I have had some success in managing my MS in the past month, as well as some distinct challenges. I have personally changed my diet significantly in the past few weeks, and have dropped almost 14 pounds from right before my first infusion.  I've also tried to drink as much water as possible.  I'm still battling fatigue, so I don't think that the Amantadine is working, but will continue to take it.  This past weekend, I did a ton of yard work and house cleaning, and did pretty well with a lot of breaks.  I am paying for it today with a tough MS day, but I'm trying to keep my spirits up.

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.

Infusion Day - 2nd 300mg of Ocrelizumab

Today is infusion number 2, which means I get the second dose of 300mg of Ocrelizumab. No changes in the past couple of weeks since the first infusion.  Basically, I don't feel any different but know that this isn't suppose to be a quick fix. It will take time for me to see results, if any. Schedule today is almost the same as the last visit, but without the EDSS tests. I do not have to come back for my next infusion for 6 months. Before the infusion starts, the Neurologist does a physical exam and starts taking vitals on a schedule. I did nap a bit more today than I did last time, and the Benadryl makes you sleepy. The infusion machine beeps when it is done with each cycle, so the naps were short.

 

Last time I brought a full backpack of things to do. I've traveled light today, and only brought my iPad, smartphone, and a lunch bag. I realized that I'm perfectly content with just surfing the Internet all day, and don't need to get any "work" done.  I was able to drive myself home, and a few hours later, I still feel completely normal.

Today's Vitals:

Weight: 253.6

Blood Pressure and pulse readings throughout the infusion cycle:

• 116/77  -  62 - 97.4
• 121/81  -  57 - 97.9
• 126/71  -  62 - 97.4
• 142/78  -  70 - 97.4
• 130/72  -  67 - 98.0
• 119/73  -  72 - 97.6
• 125/68  -  74 - 97.6
• 120/71  -  72 - 98.2
• 122/74  -  69 - 98.5
• 127/72  -  75 - 98.5
• 138/84  -  76 - 98.2

Post Infusion Improvement

I wanted to post an update with my improvements the day after my infusion.  I am assuming that this is only due to the steroid infusion I had yesterday.  Although I have used Prednisone in the past, this is the first time I've had it administered interveniously.  The biggest issue I had was not being able to sleep last night.  I didn't have trouble falling asleep, but was up numerous times throughout the night for extended periods.  Although my heart rate was normal, I was cogniscent of my beating heart while I was laying there.  When I got up today, I did see some big improvements in my walking and balance, and noticed that I didn't have the knee pain or soreness in my arms that I normally have. I also did not have any cramping or ligament stiffness today.  I don't think that this has anything to do with Ocrelizumab, but the steroids.  I wanted to post this so that people would know what to expect post-infusion.  I don't know how long this reduction in MS symptoms will last, but I'm happy to be having a great MS day.

A Study of Ocrelizumab: Phase III - CHORDS MN30085

I thought that I would post additional information about the study that I am participating in.  All of this material is on the clinicaltrials.gov website, and is subject to change at any time.

Sponser:  Genentech            clinicaltrials.gov Identifier:  NCT02637856

As of this blog post, this study is still looking for participants.

Purpose:  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.

Study Type: Interventional
Study Design: Allocation: Non-Randomized
Endpoint Classification: Safety/Efficacy Study
Intervention Model: Single Group Assignment
Masking: Open Label
Primary Purpose: Treatment
Official Title: AN OPEN-LABEL STUDY TO EVALUATE THE EFFECTIVENESS AND SAFETY OF OCRELIZUMAB IN PATIENTS WITH RELAPSING REMITTING MULTIPLE SCLEROSIS WHO HAVE HAD A SUBOPTIMAL RESPONSE TO AN ADEQUATE COURSE OF DISEASE MODIFYING TREATMENT

Primary Outcome Measures:

• Percentage of Participants Without Any Protocol-Defined Events (Relapse, T1 Lesion, New and/or Enlarging T2 Lesion, Confirmed Disability Progression) During 96-Week Period [ Time Frame: Baseline to Week 96 ] [ Designated as safety issue: No ]

Secondary Outcome Measures:

• Percentage of Participants Without Any Protocol-Defined Events (Relapse, T1 Lesion, New and/or Enlarging T2 Lesion, Confirmed Disability Progression) During 24-Week Period and 48-Week Period [ Time Frame: Baseline to Weeks 24 and 48 ] [ Designated as safety issue: No ]
• Time to Protocol-Defined Event (Relapse, T1 Lesion, New and/or Enlarging T2 Lesion, Confirmed Disability Progression) [ Time Frame: Baseline to Week 96 ] [ Designated as safety issue: No ]
• Percentage of Participants Per Year with Protocol-Defined Relapse [ Time Frame: Baseline to Week 96 ] [ Designated as safety issue: No ]
• Time to Onset of First Protocol-Defined Relapse [ Time Frame: Baseline to Week 96 ] [ Designated as safety issue: No ]
• Time to Onset of First T1 Gadolinium (Gd)-Enhanced Lesion as Detected by Brain Magnetic Resonance Imaging (MRI) [ Time Frame: Baseline to Week 96 ] [ Designated as safety issue: No ]
• Time to Onset of First New and/or Enlarging T2 Lesion as Detected by Brain MRI [ Time Frame: Baseline to Week 96 ] [ Designated as safety issue: No ]
• Time to Onset of Confirmed Disability Progression for at Least 24 Weeks According to Expanded Disability Status Scale (EDSS) Score [ Time Frame: Baseline to Week 96 ] [ Designated as safety issue: No ]
• Total Number of T1 Gd-Enhancing Lesions as Detected by Brain MRI [ Time Frame: Weeks 24, 48, and 96 ] [ Designated as safety issue: No ]
• Change From Baseline in Total T2 Lesion Volume Detected by Brain MRI [ Time Frame: Baseline to Weeks 24, 48, and 96 ] [ Designated as safety issue: No ]
• Total Number of New and/or Enlarging T2 Lesions Detected by Brain MRI [ Time Frame: Weeks 24, 48, and 96 ] [ Designated as safety issue: No ]

Estimated Enrollment: 600
Study Start Date: February 2016
Estimated Study Completion Date: December 2019
Estimated Primary Completion Date: December 2019 (Final data collection date for primary outcome measure)

Eligibility

Ages Eligible for Study:   18 Years to 55 Years   (Adult)

Genders Eligible for Study:   Both

Accepts Healthy Volunteers:   No

Criteria

Inclusion Criteria:

• Diagnosis of multiple sclerosis (specifically RRMS), in accordance with the revised 2010 McDonald criteria
• Disease duration from first symptom of less than or equal to (</=) 10 years
• Treated with or received no more than two prior DMT regimens of greater than or equal to (>/=) 6 months, and the discontinuation of the most recent DMT was due to lack of efficacy
• Suboptimal disease control while the participant was on his/her last DMT for >/=6 months (defined by having one of the following despite being on a stable dose of the same DMT for >/=6 months: one or more clinically reported relapses, one or more T1 Gd-enhanced lesions, or two or more new or enlarging T2 lesions on MRI); in participants receiving stable doses of the same approved DMT for more than a year, the event must have occurred within the last 12 months of treatment with this DMT

Exclusion Criteria:

• History of primary progressive multiple sclerosis (PPMS), progressive relapsing multiple sclerosis (PRMS), or secondary progressive multiple sclerosis (SPMS)
• Contraindications for MRI
• Known presence of other neurological disorders that may mimic multiple sclerosis
• Pregnancy or lactation
• Requirement for chronic treatment with systemic corticosteroids or immunosuppressants during the course of the study
• History of or currently active primary or secondary immunodeficiency
• Lack of peripheral venous access
• History of severe allergic or anaphylactic reactions to humanized or murine monoclonal antibodies
• Active infection, or history of or known presence of recurrent or chronic infection such as hepatitis B or C, human immunodeficiency virus (HIV), syphilis, or tuberculosis
• History of progressive multifocal leukoencephalopathy
• Contraindications to or intolerance of oral or IV corticosteroids

Additional information can be found on the clinicaltrials.gove website for study NCT02637856

***All information on this page is from https://clinicaltrials.gov/ct2/show/NCT02637856

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.  

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.

Final Tasks: MRI, Blood Test, and Pee in Cup...

Getting into the death tube now seems like routine.  I think that this is the 4th MRI I've done in the past 2 years.  I'm not claustrophobic and I enjoy being able to just relax and think when I'm in the MRI machine.  The substance they inject made my hand feel heavy and left a metallic taste in my mouth, but that's pretty much the extent of the downside of an MRI.  I did my final blood and urine test today as well.  Only one week left until my first infusion.  I'm getting excited about the possibility of getting some of my life back.  I do have copies of a couple of my older MRI's.  Since this is part of a drug study, I probably won't personally get to have copies of the MRI from today, so here is a sequence from 2014 when I was diagnosed:

2014 MJM MRI from Michael Mikkelson on Vimeo.

Tracking Levels and Symptoms

My symptoms have progressed enough in the last six months that it's hard to pinpoint when different things started happening. I decided that throughout this trial of Ocrelizumab, I would track the symptoms in a spreadsheet to see if there is any improvement or decline over time. I'll use a google spreadsheet that will be open to anyone, and eventually create charts to graph the progress. There is a quick link on the side of this page, but you can click here to view the baseline spreadsheet.

I'm hoping to see these numbers decline after I get the treatment, but understand that there are no guarantees. Yesterday was a particularly difficult day, MS wise, so it's a good starting point. I realize that there is a definite potential that things could get worse, and at least I'll be able to see the trends for my most common symptoms.

A drug has no name. Wait, it's Ocrevus.

Looks like Ocrelizumab actually does have a name for the retail market.  Ocrevus.  It's interesting that the drug names are all made up words, probably in an attempt to ensure that the domain name still exists. All other dictionary names have been taken, so they need to make stuff up.  It's nice the Ocrevus is at least easier to pronounce than Ocrelizumab.

Update:  Initial blood tests came back with good results, so I'm still a go for the infusion on the 28th.  My Cholesterol is low, which has always been true.  My triglycerides are high.  Everything else looks great.  A week from today is the final blood tests, and 2 weeks from tomorrow is the infusion. Today is sort of a relapse from a relapse.  It is the first "Good" MS day I've had in a while.  My symptoms seem to always be present, so having a day where they are less noticeable is very welcome.

FDA grants priority review for Genentech's Ocrevus (Ocrelizumab) Biologics License Application.