Ocrevus To Be Continued... Part II
Written 3/15/22: Ocrevus PART II
Check out blog post: Whoop There It Is... Another Bump In The Road for Ocrevus Part I.
It is my one-week mark since my first interaction with Ocrevus.
So far, the side effects from my Ocrevus reaction have not affected my lifestyle too much. Friday March 11th was a pretty good day as I spent it with my family exploring the Bend area. Family time is important, and we considered it a small vacation. I fought mostly nausea that day, but jolly ranchers have kept me from losing my cookies. Saturday March 12th was probably the hardest day for me. We traveled home that day and nausea combined with head pressure (didn't feel like a headache) did not help at all. I did sleep most of the day due to feeling fatigued. Other than those days I am doing well. My body aches a bit, leg pains still remain, and lack of sleep still exists. I struggle with nausea, but my body is adjusting to the changes. The whole experience definitely made us all feel like we were punched in the face. The waiting game for Tuesday March 15th to speak with my MS specialist was rough but we made it.
Tuesday March 15th, 2022, I woke up to a bunch of portal messages from my MS specialists. I was then given a tele visit appointment at 3pm to talk about my experience and what we could do next. After giving the play by play (we used my text messages to my husband) as reference. My doctor first told me that if she was in town when my reaction occurred, she would have not stopped the treatment. I am the 1 in 3 people to have some sort of reaction to the medication. She would have had them challenge (restart) at slower pace because my reaction was more likely from the medication then an allergy. When they gave me the Benadryl it resolved itself quickly. GOOD NEWS! She did inform me that numbness can be a type of reaction and it depends on who the individual as to where in the body they experience it. I guess my face/head was my lucky spot. The rash and flushing is a very common reaction which is why they introduce steroids and Benadryl prior to start of medication. I can't express how relieved I was to hear that my reaction was nothing of major concern. After clarifying some more in detail questions about Ocrevus and Kesimpta ( another possible DMT ) we all felt comfortable with giving Ocrevus another try. That being said my next adventure back to Bend, OR will be Thursday March 24, 2022.
We have a different plan of attack...
ONE: I will pre dose with Zyrtec a couple of days prior. This will allow me to bypass the Benadryl which I struggled with at the first dose. Benadryl will be administered if a reaction shall occur again.
TWO: The Ocrevus will be administered at a slow pace which means a longer day.
THREE: The offices figured that I got about 2/3 (200ml) from the first round which means I am short 100ml. I misjudged it and wrote only 1/3 on my last blog post. Sorry. They are going to try and add what was missed from first infusion to this next round making it about 400ml in total. A full dose is normally 600ml. They want to give as close to the 600ml mark between both 1/2 doses (300ml each) as possible.
FOUR: Doctor will be in the office on the scheduled day for the infusion. YAHOO!
We are working on putting plans together and preparing for lots of fatigue. All the information and fears is a lot to take in and digest. We are working together as a family to rebuild and stay positive. We have asked for support this round and we are thankful to have both of our moms join us on this journey. If things go the opposite direction our plan B is Kesimpta which basically does the same thing as Ocrevus but you give yourself a shot monthly. We figured that we have already introduced my body to Ocrevus so maybe this next time my body will recognize the medication and not react as quickly. The doctor did mention that every infusion will get easier we just need to get through these first two.
It is not easy to make decisions about your health and next steps with medication. I think that this is one of the hardest things about living with a chronic disease. Do your research, ask as many questions as possible, trust your body and trust the instincts you have about situations. Again, we stepped away from the tele visit feeling some relief and comfort. We have a plan B which is always reassuring. That is what helped us as a family accept this next step. We still are VERY nervous and anxious but somehow, I feel like this will work out. We GOT THIS!
I will try to update you ASAP, stay tuned to see how Ocrevus Part III goes...
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