Good Afternoon (It’s after Noon at my house) Everyone! Today is Tuesday, May 5th, so Happy Cinco De Mayo! Yesterday was the 4th, of course, so a belated, “May the 4th be with you!” as well. 🙂 This is my first post in over a week, or right at a week.. can’t remember, and I feel bad about it! As I mentioned on my initial posts, I fully intended to post at least twice, if not three, times each week. Well, with Corona Virus Quarantine and all the accompanying restrictions, we’ve been doing a lot more homework and entertaining kids than I had originally thought possible. Some good news though, my oldest son started his new job today and my other two boys are looking pretty hard. Once they’re able to clear out of the house more, that should free up some time for me to write (If that really matters to anyone). 🙂
Today I want to talk a bit about the steroids that are given as part of the Ocrevus Infusion Process (Remember, Ocrevus is the latest and greatest in MS Drugs for MS patients). If you’ve read my prior posts, you already know that, in addition to the steroids, Benadryl is administered about an hour prior to the infusion to limit less serious allergic reactions (Itchy throat, itchy scalp, coughing, etc.). Steroids are administered at the same time to address the potential for more serious side effects of the infusion (Not really sure what those could be… I don’t usually look for that kind of information… ignorance is bliss.. right?).
The steroid I was given is called Methyprednisolone and it’s a corticosteroid. There are several steroids in the “corticosteroid” class, so I’m sure other folks may receive something different than me. I imagine these steroids share side effects, so at least everyone on it has the potential for some unpleasantness. 🙁
What ARE the potential side effects you ask? Well, based on a quick review of some websites (Hey, if it’s on the internet… it MUST be true!), the side effects are, but may not be limited to, the following:
- Headache – I didn’t experience this
- Nausea and vomiting – THANK GOD I didn’t experience this one!
- Weight Gain – I thought I was over eating due to being stuck in my house?
- Confusion, Excitement and Restlessness – A bit of the restlessness for sure
- Swelling of ankles, feet and hands – Nope again
- Skin Problems – Not that Im aware
- Increased thirst – Maybe for me
- Increased chances of infections – Nothing as of yet
Some of the Additional Side Effects that I also experienced, while not as common as the above, were:
- Sleeplessness – A lot of this for almost two weeks. 🙁
- High Energy – This one was really confusing! Why? The first day after the infusion I felt like I could run a marathon. But then there was day two and…
- Lethargy/Fatigue – People, I am not lying to you when I tell you I was so tired after each infusion that I wondered why in the world I was taking any medication. Medication is supposed to make us better! Right? Anyway…. Fatigue is one of my major MS “issues”, but the fatigue associated with the steroids was really, really awful. I was frustrated, my wife was frustrated (Yes, she gets mad at me sometimes… hard to believe that’s possible as Im usually completely awesome, but there you have it) and it just didn’t go away for almost two weeks. Worst part of the experience… by far! If you were paying attention, you’ll say to yourself, but Steve said he couldn’t sleep for two weeks at the same time. Is it possible there’s a correlation between the two? I can only say… yep!
- Racing Heart Beat – This was a weird one and a bit unsettling. I could be laying around, doing nothing active (Which was most of the time anyway), but my heart was beating at a rate that would suggest I was running a race. Fortunately, this was only for the first couple of days.
So, obviously, the steroids are no picnic! In fact, before my second half-infusion I contacted my Neurologist to see if I could skip the steroids. I had seen in some online groups where people were not receiving the steroids with doctor approval… but my doctor said they were a requirement. I guess he wants to make sure the first few infusions are non-problematic and then maybe we can talk about skipping the ‘roids. We’ll see.
That’s it for today! I hope this one doesn’t sound too much like whining, but even if it does… well.. it is what it is. 🙂 Most aspects of day-to-day living with MS are OK and if the solution to keeping things that way is an inconvenient infusion and a few weeks of feeling crappy, then I’ll still say it’s a positive!
Stay safe and I’ll figure out the topic for my next post before I start writing it! 🙂
