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.

1 year+ on Ocrevus

My initial infusion was just over a year ago.   When I was originally approved to go on the CHORDS trial, I was super excited.  I really had high hopes for this drug and it's capabilites.  After a year, and 3 full doses, I am not so sure that it is doing anything for me.  The only good thing is that my MRI doesn't show any significant findings.  Otherwise, I continue to degrade in pretty much all my symptoms.  A year ago, I could still walk around without a cane, although with a limp and balance issues.  Now, I cannot walk without the cane, and am on the verge of getting a mobility scooter.  I am seeing a little relief now that the weather is getting cooler, as I had a very difficult summer in the heat.  I battle fatigue on a regular basis.  Most of my symptoms are not he right side of my body, but are starting to get worse on my left side.  I was hopeful for the miracle and potential that Ocrevus was supposed to deliver, but apparently, I am part of that small percentage where the drug doesn't work.  I am committed to finishing the trial, but will have additional conversations with my Neuro on alternatives.  I truly hope that this drug works for all those who are using.  I also hope that it's just taking longer for me than usual, and that I'll start seeing results.  Good Luck everyone.

One Month Post Infusion

Not much change on this end after the last infusion.  I was in the hospital one week after the infusion to help battle a relapse, but as of today, I'm pretty much back to where I started.  I am battling terrible fatigue, and am walking very slow today.  My balance is way off, and I'm having trouble walking without a cane.  I wish there was better news, but it doesn't look like Ocrevus is stopping the progression of MS with me.  :(

In Hospital on a Holiday!

Happy 4th of July. I'll be enjoying America's birthday by getting a steroid infusion of Solu-merdrol.  Actually, today is day 2 of 3 for the steroid infusion. The doctor yesterday said that I should be able to start seeing the effects of the steroid after the 2nd infusion of 1000mg. The hospital staff is very nice, but asks for my birthday a million times a day, and want me to notify them every time I have to go to the bathroom so they can stand outside the door. I'm getting a lot of ipad time while sitting in this chair, so I thought I'd update the blog. In addition to the infusion, my neurologist ordered an MRI of my spine yesterday to review.  I was in the MRI machine for just over 2 hours, which got a bit uncomfortable. They asked what kind of music I liked, but then never actually played anything. I don't think that this hospital visit is part of what's covered in the CHORDS trial, so it will most likely go on my insurance. If so, I'll ask for copies of the MRI.

The hospital food is very bland, but I have good options. I'm in pretty good spirits, but am a little skeptical that even the steroids will do anything to help.  I've also seen on a few of the Facebook groups that people get this infusion from their doctor's office.  It would have been nice not to have to stay overnight in the hospital, as it seems excessive, expensive, and unnecessary.  I'll be sure to ask the next time I see my MS Nurse.

One Week Post Infusion: Relapse

Not really what I was hoping for after my latest Ocrevus infusion.  Unfortunately, the past week has been extremely challenging, and my MS symptoms are worse than ever.  I went back to the Neurologist today and had a full exam.  My EDSS score was 6.5 today.  On my walking test, I was told to stop after 7 of the 10 laps because I was so slow and struggling.  My doctor gave me the option of checking into the hospital today, or waiting until Monday.  Without any way to make the proper arrangements for my dogs, I chose to wait until Monday.  I have Tuesday off for the 4th anyway, so go America.  You know it's bad when your boss asks you point blank when you're getting a scooter.  I suppose that it's inevitable, but hoping that the steroid next week will help.  Sounds like I'll get 3 days in a row with 1000mg of solumedrol.  I'm supposed to go on vacation at the end of next week, so I'm concerned if these symptoms don't lessen.  

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.

Over 6,000 Steps and Falling Down in Front of Hundreds of People!

I went on another business trip this week to Denver. On the way back, we got to the airport plenty in advance, so I decided that I would take my time and walk to the gate. I got through security fine, but started to struggle once I got to the terminal I was in. Long story short, I tripped and fell in front of no less than 200 people waiting for their flight.  An number of people came to assist, which was nice. I ended up taking a skycap the rest of the way to my gate.  This whole "not being able to walk" thing is really starting to get annoying. I am going to fight as long as I can to not put myself in a wheelchair, but I think that it will be sooner than later.  :(

The good news is that I did have over 6,000 steps that day.  I normally track about 2,300, so I was well above my average.

***  I tripped an fell backwards at the gas station today.  So that is twice in a week.  This sucks.