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:
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.
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.
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.
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 |
- 122/73
- 119/77
- 113/75
- 100/69
- 123/73
- 135/74
- 140/76
- 134/72
- 123/74
- 113/73
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.
I can't thank you enough for this blog! I have my first Ocrevus treatment tomorrow! This was incredibly helpful:)
ReplyDeleteGood luck with your Ocrevus treatment!
DeleteIs there routine lab work with Ocrevus like there is with Rituxan to monitor the B cells?
ReplyDeleteEvery 6 months.
DeleteIs there routine labs like with Rituxan every 3 months?
ReplyDeleteEvery 6 months during the trial
DeleteHi Mike, thanks so much for writing this blog. I'll get my first infusion on Friday, 6/16. Having never been on an infusion therapy before, I'm a little nervous about it. I decided to try Ocrevus despite remaining stable on Tecfidera (and, before that, Copaxone) because I'm hoping that it might reduce the number and/or size of my lesions. And, although I have no reason to expect it, a reduction in my chronic fatigue would be fantastic if it happened.
ReplyDeletePlease continue to blog when you are in the mood to do it, as it's interesting and also very helpful information. I hope that your EDSS scores stabilize or, better yet, improve!
All the best to you,
Al Stein
al_r_stein@yahoo.com
Thank you for documenting your experience. I hope your treatment goes well.
ReplyDelete