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.

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

One Month Post 6 Month Infusion

So, I'm getting a little worried and discouraged. I am trying to maintain a positive attitude, and know that this will take some time. It's hard when you hear stories about others on this drug who have had success with reduced symptoms.  Unfortunately, mine continue to get worse. It's winter in Wisconsin, and luckily, we haven't had really any snow this year. But the cold gets to me. I am deteriorating, and struggle to walk distances without significant effort. I went on a trip to Texas a little over a week ago for work, and walking through the airport was a real struggle. I'm suppose to go on a few more trips in the next few months, and have second thoughts on doing them due to all the walking required. I'm even having issues typing this message, as my right hand no longer wants to cooperate as I type. I don't really care what people think, but I now park almost exclusively in the handicapped spots. I need to use my cane if I'm not inside and can hug the walls. I struggle with stairs, so avoid them. I realize that so many are waiting for this drug to be approved, so I wish that I had stories of how this performs miracles.  For now, for me, it hasn't seemed to do much. I will continue to hope for a turn around, and see the progression of this disease stop. Being patient is really difficult, but it's the only thing that I can do right now. It's been one month since my 2nd infusion, which occurred at 6 months. I really hope to see some good things soon.

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!

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.  :) 

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.

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.  

My History with MS

Before I get my Ocrelizumab (Ocrevus) infusion in a few weeks, I thought that I would give a little history of my condition.  I realize that not everyone with MS has the same experience or symptoms, but maybe some of the things that I went through will be similar to others who are fighting MS.  From a health standpoint, I've always been pretty healthy.  I was athletic and did a lot of water and snow sports to keep active.  I had a lower back surgery in 2009 to deal with a protruding disc that was causing a ton of discomfort and sciatica.  I had a second surgery in the fall 2013 on the same area, as I was having more back problems.  Around the same time, I notices tingling in my toes and fingers.  Unfortunately, the back surgery did not alleviate any of the tingling in my extremities.  I was sent to my first Neurologist, and he suspected Multiple Sclerosis almost immediately.

He referred me to a specialist in MS after the tests and MRI came back confirming the diagnoses. In 2014, there was a number of different treatments for MS, but no cure.  I made the decision to participate in a clinical trial for the drug Gilenya.  I wasn't too excited about taking any drugs that forced me to take injections daily, and the possibility of taking a pill to slow down or halt the disease.  I was part of the clinical study for a year, and then switched over to my insurance footing the bill for the drug.  I continued to see progression of the disease, so in December of 2015, I talked to my Neurologist about other options.  I had seen some articles praising Ocrelizumab as a breakthrough medication that would be going tor FDA approval.  I wasn't willing to wait that long.  He told me about a potential study that would be available in 2016 using the drug.  I was also told about an alternative called Lemtrada, which worked in many of the same ways as Ocrelizumab, but had higher risks.  I told him that I was willing to wait to see if I could get in the study, versus having my insurance pay for Lemtrada.  Unfortunately, there were delays in getting the drug study for Ocrelizumab going, but we're very close now.

Here are my symptoms as I go into the study:

• Numbness in my toes, with it being far worse on the right side.
• Cannot bend my big toe on the right side without significant effort.  
• Knee pain on left leg, and stiff ligaments.
• Difficulty walking after sitting for a while.  Need to stretch for a few steps.
• Severe difficulty with stairs.  
• Balance is messed up.  Hug the walls when walking inside.
• Numbness and tingling in fingertips.  Dexterity has worsened.
• Cannot lift right leg without significant effort.  Impacts things like driving and getting in and out of a car.
• Cannot bend right foot forward.  Range of motion is limited.
• Walking is getting to be difficult.  Cannot walk extended periods without rest.
• Trouble sleeping
• Spasms in legs at night / Spasticity
• Cramping of legs

The good news is that my vision is still exceptional.  My latest test still showed 20/10 vision without glasses in both eyes.  I am still able to walk, but it is strenuous at times.  I don't really feel back pain, but with less padding between the bones in the spinal cord, I do have soreness at times.  I have been off of Gilenya for a few weeks now to ensure that I start with a clean slate in the study.  I have noticed some degradation in my abilities in the past few weeks, but it also has been incredibly hot outside which can affect people with MS.