Disease Modifying Treatment for RRMS

Today is my first infusion of Ocrevus. I am going to an infusion center in the city, about 45 minute from my home. Crossing my fingers for smooth sailing into the city. 

My Day as a Single Mother on a Disease Modifying Treatment for
Relapsing and Remitting Multiple Sclerosis. 

Overview of My Day

  • 7:45 a.m. - Put the mini on the bus, give the bus driver a note reminding him where she will be getting off today.  I am nervous someone will forget. 
  • 9:00 a.m. - Went to my daughters initial evaluation for SpEd. She will hopefully be put on an Individualized Education Plan (IEP) to help her cope with anxiety and issues with speech and language development.  Wonder how a mini so young could have anxiety? Live with a mum with a chronic illness and it becomes clear.  As we finish the meeting I ask her teacher to remind the Mini she is taking the bus to her Grammy's house. I am feeling a little less nervous. 
  • 10:15 a.m. - Drove to the city for my infusion. It was a good time to leave for the city.  Traffic had cleared out and I was able to get there with time to spare.
     Elevator Medical Infusion Center. Charles River Plaza 165 Cambridge Street Floors 8 and 9. Boston, MA
  • 11:30 a.m. - Hooked up to an IV!! Turns out I put the time for my infusion in my calendar wrong.  Don't know how seeing as I added it from the patient portal but I arrived at 11:00 for the 11:30 appointment to be told my appointment was at noon.  Well I was already up there! No going back now!
    • I made my way to the bathroom twice on the pump. I was walking fine, not feeling too weak.  Luckily it was a good MS day! 
  • 2:00 p.m. - Got a little less than halfway done and started getting an itchy throat. Had to pause the medication, switch to saline and get more meds. This pushed me back about thirty minutes.  Pushing my exit time farther into rush hour.
    • Headed to the bathroom one more time.  Still feeling fine.  Starting to get a headache but nothing too bad. 
  • 3:00 p.m. - I begin panicking that something will go wrong with the mini getting to my mother's house.  I remember, hooked up to an IV that I didn't leave a car seat and begin set of "totally calm" (read I am frantic) text messages to my mother reminding her of the time of drop off, where she needs to be, ect.
  • 4:00 p.m. - Finished the rest of the infusion and right as it was ending the back of my mouth started getting itchy. Just one more hour in the chair to get saline to push it into my system.  
  • 5:15 p.m. - On my way to the car.  My legs are sore but not numb so its a win.  I have a banging headache coming on but over all I am just hungry and wired.
    • Stopped off for some fast food because I am starving. Should be back to my home town to pick up the Mini by 6:30! 

  • 6:30 p.m. - The mini is ready to go home! She had a great time at Grammy's but she wants to be with me.  
    • My Mum says the mini was great all evening but was getting concerned that I still wasn't there...
    • Once in the car the tune changes, smiles are gone: There are tears. She is beside herself.  She just wants to be home with me. Ugg.
    • My legs feel like I was run over by a truck and it is taking all of my self control not to break into tears with the pain.
  • 6:45 p.m. - The mini is on fire from the moment we walk in the door. She is a solid jerk ... 'Lets do art' she says.. I sit down grab some paper and a marker pat the couch next to me and start drawing. She grabs the paper, crumples it up. Twice. I get up and walk to my room and sit down. She come in, "I wanted to play Legos," she whines. I look at her. WTF I think.  I tell her "I really want to be alone, you are being mean...  I don't want to play with you since you are mean."  Yup. That's my solution.  She starts pulling at my sweater and I snap, "Right now, mummy is sad about your behavior.  If you rip my shirt, I am going to be really mad." I am mostly calm, but there is ice in my tone, I don't yell.  We have a short back and forth about how she made me feel ruining my art.  She apologizes, I don't move.  I tell her she can get the Legos and when I am done feeling sad about how she treated me I will come play too. 
  • 7:15 p.m. - After the fine beginning to our evening (how I love sarcasm) at home I am still in my room.  I am waiting.  She knows that if she gets the Lego bins from the play room I will come out and play Legos with her.  I finally hear the door open and a bin get dragged out. One. Not two.  Hmmm... What's her angle? I find her sulking on the kitchen floor. Normally when I reprimand her she sulks in my room. I beat her there tonight.  I am assuming she picked the kitchen because the heat isn't on in her room. I pull out the second bin. I walk to the kitchen, pain shooting through my every step, but I am not off balance, my legs are not weak.  This is doable. We have been in a 15 minute stand off, I can meet her halfway. 
  • We play till bedtime putting the Dumbo Rats in the house that we built together.  I am tired, but the steroids will make it impossible to sleep. I lay with her, she falls asleep quickly.  It was a stressful day: for both of us. It was a successful day: for both of us. We both made it.

What is an infusion day like? This is what my first Ocrevus was like for me:

The first 30 minutes I was given saline and a corticosteroid, an antihistamine, and an medication for heartburn in my IV to help reduce possible infusion-related reactions. I was also given 2 Tylenol to take orally.  Pepcid (famotidine) is a histamine-2 blocker that works by decreasing the amount of acid the stomach produces, since it is a histamine blocker is works with the Benadryl (Diphenhydramine) 
Once we started the Ocrevus I didn’t feel much different. Overall not so bad. I have a kicking headache and my extremities are not impressed. I doubt I could hold a pen or pencil right now. When my stress level is high, my symptoms ramp up if I am in an exacerbation, so the fact that my hands and legs are uncomfortable isn't surprising. 
I am pretty hydrated between the saline and bottles of water that I am drinking. I have gone to the bathroom 3 times while hooked up.  

What I did feel ?

  • itchy skin
  • tiredness
  • coughing or wheezing (but I came with a cough so it doesn’t count)
  • throat irritation or pain
  • headache
  • fatigue

What Didn’t I Have (these are common side effects)

  • rash
  • hives
  • feeling faint
  • fever
  • trouble breathing
  • redness on your face (flushing)
  • nausea
  • swelling of the throat
  • dizziness
  • shortness of breath
  • fast heart beat

In case you are curious about my current MS symptoms here goes:

  • New! L’hermitte phenomenon, or Lhermitte sign, is an uncomfortable "electrical" sensation that runs through the back and into the limbs. I don’t feel the sensation in my spine, instead it radiates to my legs and sometimes my arms. Like in many people, it is elicited by bending the head forward.
  • New! The pain that accompanies me most days in my legs has decided to work its way to my butt. This may not sound like a big deal but in the past the pain and burning stayed in my lower legs and only on really bad days would it make it to my thighs. To have the feeling creep higher is nerve racking (Get it? nerve racking, because its my central nervous system…Its a pun... )
  • New! I seem to be getting dizzy at weird times. It started at the same time as the Lhermitte sign.. Mostly it is vertigo while showering.  This is pretty self explanatory.  For the past week or so I have been dreading the shower, at least once during a 5 min shower (I have always been quick) I will get dizzy and start to feel like I am going to fall. Not fun considering the mini almost always showers with me. IT won't be a good look if I bowl her over. So far I have not actually fallen.  I grab the wall and steady myself.  It only last 2 seconds, maybe 3. Thankfully.
  • Existing Upper Body: My hand grip is tough, I am not dropping things so I can sustain for a while. My hand grip is tough, I am not dropping things so I can sustain for a while.
  • Existing Neck & Up: I had thrush and it seems to be gone, but my sense of taste comes and goes. No it is not COVID-19.  It is a seemingly rare MS side effect. I have had word finding issues since I was diagnosed. I can usually tell when a exacerbation is coming because it get worse and worse. This time I can hear myself stutter as I look for words. I will need to be more aware of the feeling of aphasia raping up. I have found slowing down, resting, getting my ideas ready is the best way to find words.
  • Existing Lower Body: My legs are painful, burning, and have vibrations running through them. My feet go numb all the time. So not that anyone wants to know this but here goes… if I am relaxed I find myself heading to the bathroom with a strong urge to urinate, all the time. Even if I just went to the bathroom, due to some fun bladder retention issues, if I sneeze, cough just right, am surprised or laugh, I will probably wet my pants. My gait keeps getting worse, but like most things with MS, there are good days and bad.

 

 


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