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.

Battling Fatigue - Amantadine

When I went into the office earlier this week to get my 2nd Ocrelizumab infusion, I asked the Neurologist if there was anything that I could do to help with my increasing fatigue. I struggle with getting tired even doing small things, and hoped that there would be something that could help. He explained that there are a number of different options for Multiple Sclerosis patients who experience fatigue, but suggested we try a drug called Amantadine. Apparently, this drug has been on the market so long for use with Parkinson's disease patients, that there is only a generic version of it. I filled the prescription yesterday, and there was no charge from my insurance. I have a couple of business trips coming up, and I dread how tired I get dragging my luggage through the airport.  Hopefully, this will help address the fatigue while I wait to see how Ocrelizumab works for me. I will say that I had a hard time sleeping last night, and was up a number of times. I'll have to ensure that I don't take it too late in the day. There are other options if this doesn't seem to work, so let's hope for the best!

*** Amantadine is used to treat Parkinson's disease and conditions similar to those of Parkinson's disease. It also is used to prevent and treat respiratory infections caused by influenza A virus.  Amantadine is an antiviral medication used to prevent or treat certain influenza infections. It has been demonstrated that this amantadine, through some unknown mechanism, is sometimes effective in relieving fatigue in multiple sclerosis.

http://www.nationalmssociety.org/Treating-MS/Medications/Amantadine
https://medlineplus.gov/druginfo/meds/a682064.html

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