Ocrevus Part III A Success... What's Next???

 Written 3/28/22: Ocrevus PART III

Check out previous blog posts for Part I and Part II of the Ocrevus Journey. 

My MS journey always seem to be more of the choose your own adventures type of books. Everyone wants that fairy tale ending, right? Well... Here is a little something that you don't hear from other individuals who are on the Ocrevus journey. 

Our journey started the night before as we traveled to Bend, Oregon on March 23rd and made ourselves comfortable in a hotel. This round trip we were blessed to have both of our moms join us and be our support. We probably could have done this on our own now that we know what to expect but I felt more comfortable with the idea of having another pair of eyes and ears with me. I am very glad that I was able to have one person accompany me. 

The morning of Thursday March 24, 2022, started out at 6:45am. At this time, I told my family that I felt ready but at the same time not ready for this round. My husband looks into my eyes and says lean more towards the feeling of ready. All I could do was laugh. We managed to be ready by 8am where we made our way to the continental breakfast, which was probably one of the best, I have ever had. The food was hot which is very rare in some areas. Once we finished breakfast, we loaded up to head to the infusion center. Just as we were walking out of the hotel, I got a call from the nurse who said she had to go home to switch out her prescription sunglasses, so she was going to be late. At first, I thought I missed my appointment when I answered the call and then of course at that moment my nerves began to go crazy. On our way to the infusion center I took a Zyrtec so by the time we got there the medication would already be in the system. 

Once we arrived at the center my mom and I unloaded while my mother in-law, husband and son went off to spend the day in Bend. The nurse showed up just as we were walking in the door. She was all bothered and felt very rushed. I told her to just take her time and there was no rush. We signed in and made ourselves comfortable in a room that was about double the size of the first time. It was nice to have room to move around and of course be closer to the bathroom. While the nurse was taking my blood (checking liver, kidneys and blood cell count) and finding the vein that will be the main transport for the medication we talked with the tech. I was excited to use my infusion sweatshirt which allows my to keep my arm warm the entire time. I highly recommend it   (https://www.amazon.com/dp/B07R1RTMJ3/ref=cm_sw_em_r_mt_dp_MFGXFTVD008TEPRAYA50?_encoding=UTF8&psc=1)

The conversation I had with my doctor was not completely communicated with the tech.  They only gave me the 300ml which is the full half dose. Due to the insurance and pharmaceutical companies, they cannot split the medication up from what they already offer. Then we went to the conversation about the premeds. The tech wanted to give me the Tylenol, Benadryl and steroids on top of the Zyrtec. I stopped them and told them the doctor said I could bypass the Benadryl and just take the Zyrtec. The first round the Benadryl was burning my arms while being administered so my doctor recommended Zyrtec. The Benadryl would only be used if there was a reaction. I had the tech call my doctor who was in the office to clarify. The tech did call the doctor and confirm that they would only use the Benadryl for reactions. We kept the rate at which the medication is administered to about 1/2 the speed. Goal is to get to 180ml/hr but I think that I prefer the 90ml/hr. It makes the day longer, but my body appreciates not drowning the immune system. Once that was all clarified the other premeds were administered. This time I used DoTerra essential oils to help support my immune system. Every 30 minutes I used Zendocrine, and Frankincense in roller bottles that I rubbed across my abdomen and back. It helped a lot with any inflammation or aches I had. 

Below you can see the step by step. All of this information was written down and also texted to my husband as events occurred. 

March 23, 2022 

- 1000 Zyrtec

March 24, 2022 

- 0845 Zyrtec

- 0919 Tylenol

- 0924-0930 Steroids Administered

- 0930-1000 Wait Time

- 1005 Start Ocrevus Vitals- 123/85 HR 91: Monitor: RATE 30ml/hr   VTBI 15ml

- 1030 Vitals- 115/81 HR 79 TEMP 98.9

- 1032 Monitor: RATE 60ml/hr   VTBI 30ml

- 1104: Vitals- 111/68 HR 71: Monitor: RATE 90ml/hr   VTBI 45ml

- 1135: Monitor: RATE 90ml/hr   VTBI 90ml

- 1149 Vitals- 119/86 HR 94

- 1236: Vitals- 112/74 HR 93 TEMP 98.3 Monitor: RATE 90ml/hr   VTBI 90ml

- 1304 Vitals- 117/87 HR 102 TEMP 98.5

- 1330 Vitals- 108/79 HR 98 Disconnected from Medication: 300ml Accomplished

- 1420 Vitals- 120/86 HR 86 

Had some pressure on my face and a small rash behind ears but it disappeared before I left

- 1423 RELEASED

I wish I could explain the relief and joy I felt as I started packing up my stuff and knew that I was walking out of the infusion center with some sort of step forward in this DMT journey. I cried and hugged my family tightly. This time we had no reactions that put a halt to the medication. It was smooth sailing. I fought some fatigue, but I was too alert and nervous to try and relax. Last time when I did relax then things began to happen. The day went by quickly as we watched Fresh Prince of Bel Aire, drank tons of water and just spent quality time together. 

I knew that the recovering journey was going to be tough but I am SO thankful for my family and support system. Having someone to talk to throughout the infusion and sharing a few laughs made the process a lot easier to deal with. I know that my husband felt the same way. I know that my son enjoyed having both grandmas join us. We did not stay the day after like we did after round one. We made our trek back home Friday morning. I did struggle with nausea and achiness but managed to get home without having to pull the car over. Friday, Saturday and Sunday I struggled a lot with fatigue, nausea, leg pains and overall not feeling well. I ended up sleeping most of the day and waking up to make sure that I drank fluids to stay hydrated. We are taking it one day at a time and preparing for the next step...

The next step.... Ocrevus Part IV. Yes, you read that right.

Since this round went well my doctor has decided that she would like to try and go for another 300ml. Why? Well, after speaking with my nurse this last time she said that she is pretty sure that only about 100ml was given the first round. That being said I have only had about 400ml of Ocrevus. The typical amount is 600ml (complete full dose). Doctor wants to be closer to those numbers especially if they want to wait 6 months until the next infusion. Did I mention that once all of this first set of doses are completed that I have to do an MRI in 2 to 3 months to check the stability of my MS? Having a chronic disease can be intimidating and exhausting as you work hard to try and keep everything balanced. 

Round #3 set for Thursday April 7th at 9am. 

I am not the typical case of how this whole process is supposed to go. Many individuals are able to get their two half doses and just go on with their 6 months wait. I on the other hand like to make changes to the plans. It's my story and my path. I like to stray off the path. We plan to still use Zyrtec instead of Benadryl. I asked the nurse what are the odds that I am allergic to Benadryl? I have never had it before and that is when I had a reaction. We will never know because I don't plan to use it as tester if I don't have to. 

Communication between offices can be like the game Telephone where information at the end of the line never shares with exact information. Take notes, ask questions, and bring another individual for extra pair of eyes and ears. Again, make sure you advocate for yourself. I am thankful that I spoke up about the Benadryl. 

I know that this round wasn't as action packed as my first round, but I am thankful that things went better. I hope that round #3 goes just as smooth. I am ready to climb mountains and challenge the world. I am ready to start working out again and making new memories. Bring It On Once Again...Third Time is A Charm Right???

Life is GREAT!

Every day is a BLESSING!

I chose to NOT GIVE UP!

I AM ME!

I will continue to GROW!

I am STRONG!

I can LIVE my DREAMS!

#RENITASTRONG

I am the INEVITABLE MS DEFYER

WATCH ME!!!