Getting Off Tysabri, Now What?! (MS)


Hello everyone! 

For those who are keeping up with my MS journey, thank you for your continued support!  I am slowly approaching my 5th infusion of my Tysabri medication.. I'm happy to say that, it has been so effective for me!! So thaaank you Tysabri for getting my aggressive MS under control, this really is a miraculous drug for me. 

However, as I have mentioned before..unfortunately I will be transitioning medications soon to avoid PML, a rare brain infection. Since I do carry a high titre for JCV. Choosing the next medication was another uncertainty for me, weighing out all the pro's & con's. Remember, every good has a compensation & choosing my next drug wasn't easy..  

Since the beginning my neurologist has mentioned that we are going to treat my MS with aggressive medication through IV infusion. I appreciate her tactic. The following are what was on my next list of potential treatments.. just a brief description.

  • Lemtrada

    • A chemo-therapy drug used to help Leukemia patients but is also used to treat MS patients. 
    • Intravenous medication lasting several hours.   
    • First year is 5 consecutive days of infusion. 
    • The following year is 3 consecutive days of infusion & in hopes that you no longer have to continue Lemtrada or another DMT. 
    • This is a heavy hitter drug & is only to be used if 2 DMT’s have failed. 

  • Ocrevus

    • A new humanized/patent version of Rituximab.
    • Used to treat RRMS along with PPMS.
    • New on the market March 2017.
    • Long infusion- about 4 hours not including pre-meds (tylenol & benedryl & steroids)

  • Rituxan

    • Sister drug of Ocrevus.
    •  Helps Rheumatoid Arthritis & Lymphoma patients but has also been successful in treating RRMS/PPMS patients.
    • Not FDA approved as a MS medication.
    • 1/2 human + 1/2 mouse proteins.
    • Long infusion- about 4 hours not including pre-meds (tylenol & benedryl & steroids)

After going through all these medication options, along with going back & forth on deciding which one was best for me.. Not knowing what is really going on for my own good but my MS has taught me to find my voice & ask questions. I easily got caught up & comfortable with the motions.. I had agreed that only a few infusions of Tysabri (4 months) & then transition, within 6 months of infusion there are no known cases of PML (rare brain infection) with my JCV+ titre being so high, the switch needed to be done! We had discussed my next medication being Lemtrada. My recent brain MRI had shown SO MUCH IMPROVEMENT!! Thank you, Lord! Due to my successful medication, we were able to scratch Lemtrada off the list. I was so happy about that! Because I briefly described that Lemtrada is used only if 2 DMT's (DrugModifyingTherapies) have failed.. that was not my case at all. Which brings us to Ocrevus, all the paperwork was filled out & submitted for Ocrevus..However, there were issues with the Pharmacy & my infusion center, that I unfortunately could not go on it.. the plan changes, yet again! & the winner is... Rituxan

Soo, on a deeper note.. I am low-key nervous to start a new MS medication. The same feeling I experienced a couple months ago when starting my first infusion of Tysabri. Although, i’ve gone through this before.. it still leaves me somewhat anxious. It’s normal, I know. However, mentally..I have to be strong though this. When preparing for medication, I always give myself pep talks of how? & why?

  • I am so fortunate & blessed to be on medication, to help delay the progression of my MS. 
    • Some people may not be able to receive medication due to finances.
  • Without God there is no medication.  
    • I am thankful that medication is available & that God created individuals & scientists capable of solving issues by contributing to chronic illnesses in a positive way.

Until my next MS segment on my experience with my first complete dose of Rituxan.. stay tuned! :)

Xo, Risha