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.
Wednesday, June 14, 2017
Monday, May 8, 2017
Monday, April 17, 2017
Worst MS Week Ever...
I traveled for business last week to Texas. Coincidentally, I had my worst MS week ever. The combination of additional walking, and some personal events that caused significant stress led to a very challenging week. To top it off, I fell twice yesterday. Once at home, and once in the gas station parking lot. My balance has been really off lately, and I never really worried about it too much. However, when I spent my night researching wheelchairs and walkers on Amazon, it gets a little depressing. I need to convince myself that I cannot be a burden on anyone, and that the people who are in my life understand what is involved when dealing with MS. I have to move forward without worrying about anyone who may have abandoned me, and live with my future in mind. I have a couple of months before my next MRI and infusion, but hope that it doesn't continue to get worse as Ocrevus is suppose to be my miracle drug. There is so much buzz after the FDA approval, so I need to stay positive. I need to remind myself that I have been lucky to start this before most people, and it isn't something that is going to be fixed overnight. So, I knew the day would come where I might need a wheelchair or a walker. I just didn't expect it to be so soon. :(
Tuesday, March 28, 2017
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/
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/
Friday, February 10, 2017
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.
Monday, January 9, 2017
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.
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:
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!
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/hr42.5ml - 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!
Wednesday, December 28, 2016
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.
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.
Tuesday, December 13, 2016
Testing out WalkAide: Treatment for Foot Drop
FYI: This post has nothing to do with Ocrelizumab, but is part of my treatment plan:
I had a prescription from my Neuro to go get a consultation for and AFO (Ankle-Foot Orthosis) or WalkAide, which can help MS patients with foot drop. I finally went into my local orthotics office to test both options. The AFO is basically just a carbon fiber brace that fits into your show and connects to your shin to prevent your toes from bending. I was more interested in the WalkAide system, which is an electornic device that you wear that sends an electrical impulse to your foot each time you take a step. I have used a TENS unit and EMS for therapy after my back surgeries, and think that it basically works the same way, but localized to ensure that your foot is fully up by contracting the muscles.
I had a prescription from my Neuro to go get a consultation for and AFO (Ankle-Foot Orthosis) or WalkAide, which can help MS patients with foot drop. I finally went into my local orthotics office to test both options. The AFO is basically just a carbon fiber brace that fits into your show and connects to your shin to prevent your toes from bending. I was more interested in the WalkAide system, which is an electornic device that you wear that sends an electrical impulse to your foot each time you take a step. I have used a TENS unit and EMS for therapy after my back surgeries, and think that it basically works the same way, but localized to ensure that your foot is fully up by contracting the muscles.
The device is mounted using a brace above the calve muscle, and uses sticky pads to deliver the shock to the foot. You can change the level of intensity with a quick turn of the dial I got a pretty good reaction from the device at about 3.5. I was able to rent a test unit for the month of December to ensure that it would work for me. Initial results were very positive, and seemed to be walking at a faster pace. It does NOT help with balance and fatigue. After wearing the device for a few days, I noticed that I was developing shin splints, and it was almost painful to wear the device, so I'm taking a day off from wearing it. It also has an exercise mode, that will deliver shocks at a regular interval for like 20 minutes, just stimulating the muscles. I will continue to wear and test the device for the rest of the month, and then report back here.
The biggest detractor is that this device costs about $5,000, and there is no guarantees that insurance will cover it. They even said that my insurance will most likely deny this, making it an out of pocket expense, even though it's a prescription by my neurologist. I decided to pay a $250 fee to rent the unit for a month, and used some FSA dollars that I'd lose at the end of the year anyway. There are used models online that could save me some money, but not sure if I'll still be interested after using it a month. For more information on the walkaide system, visit www.walkaide.com.
Subscribe to:
Posts (Atom)