My Rituximab experience

My Rituximab experience


After a poor response to Octogam, my Neurologist felt the next step in my treatment plan for Myasthenia Gravis was Rituximab. This is also known as MabThera or Rituxan. Here are some of my thoughts and insights on the treatment and my personal response to it.

What is it:
Rituximab is not chemotherapy but it is cytotoxic, therefore it destroys cells. 
Rituximab is a man-made antibody that targets the CD 20 B Cells. Rituximab is thought to attach to the CD20 receptors cells causing them to disintegrate. Literature notes that Rituximab should be considered as a treatment option for patients with either Myasthenia Gravis or LEMS for whom standard immunosuppressive treatments have been unsuccessful. 

How it must be given:
Rituximab is given via an intravenous infusion (IV) drip. My neurologist recommended two infusions given two weeks apart. Prior to the procedure, it is recommended that you have a baseline blood test done of your CD20 Cells. This ultimately will help confirm if the procedure has worked.

For Myasthenia Gravis it is recommended that the infusion is given over several hours, starting with a low dose as to monitor for side effects. I personally had an allergic reaction to my first dose which was a very scary event. Prior to my second infusion, I was given an antihistamine injection which prevented this.

The American College of Rheumatology recommends the following infusion protocol: 


  1. First Infusion (day1): Initiate infusion at a rate of 50 mg/hr. In the absence of infusion reaction, increase infusion rate by 50 mg/hr increments every 30 minutes, to a maximum of 400 mg/hr.
  2. Subsequent Infusions: If the patient did not tolerate the first infusion well, start at the same rate as the first infusion (50 mg/hr) and follow directions noted above.
  3. If the patient tolerated the first infusion, initiate subsequent infusions at a rate of 100 mg/hr. In the absence of infusion reaction, increase rate by 100 mg/hr increments at 30-minute intervals, to a maximum of 400 mg/hr.
  4. Interrupt the infusion or slow the infusion rate for infusion reactions. Continue the infusion rate at one-half the previous rate upon improvement of symptoms.
  5. Push 20cc NS flush into bag once bag is nearly empty to clear all medication in the IV tubing.
  6. Total minimum infusion time for the first infusion is 4 hours and 15 minutes, plus 15 minutes for the flush.
  7. Total minimum infusion time for subsequent infusions is 3 hours and 15 minutes, plus 15 minutes for the flush.

What to pack for your day infusion:

In South Africa, you are normally required to be admitted for the day in hospital for the infusion.
- medical aid card and authorization letters
- mestinon (let the nurses know you have it but keep it with you)
- extra blanket/jacket
- salty snack
- bottle of water
- phone and charger
- book or something to keep you occupied
- slippers
- comfortable clothes
- surgical mask to keep away the other hospital germs

Results:
I want to (and can) jump for joy with my personal results! For two weeks after the infusion I felt as if I had been hit by a train, and then I started to see improvement. 6 months down the line and I am off all immunosuppressives and cortisone. I still take mestinon, but no longer feel like I'm counting the hours until my next dose. I went from having to use a raised toilet seat and grab rail to stand up off the toilet and a cane to walk short distances, to having enough muscle strength to hold and ‘fly’ my little boy around the house pretending that he’s Superman. I still have ‘flare’ days like when I caught a tummy bug or got overly stressed but even my recovery from them was quicker.

 In one study all patients tolerated Rituximab without side effects and had a reduced need for immunosuppressants and/or improvement in clinical function, however, I personally know of MG warriors that have not responded to the drug. Like all Snowflakes, each one of us responds differently.

Things to remember  (future plans)
It is recommended that you do not fall pregnant for at least a year following the infusion.

References: 

Comments

  1. I am glad it is working for you. I have used Rituxan and I have to say it has been really good for me. I wish for continued success. I am on year 4.5 and still going. I wish even better for you!!

    ReplyDelete
  2. It's taken some time, but I have had significant improvement with rituxan. I am still on many of my other autoimmune suppressants but I have much going on. It has made a big difference for me.

    ReplyDelete
  3. Really glad it worked for you! Didn't work for me but I hear it's wonderful for many :) Fingers crossed that your health improves even more!

    ReplyDelete
    Replies
    1. Thank tou. Hope you find your own snowflake solution

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