The End of My LEMTRADA Journey — The End of an Era

I fully acknowledge that the title of this post is overdramatic and extra. But that’s how I’ve been feeling.

Yesterday was my monthly LEMTRADA lab day. The phlebotomist comes to my house to collect them. It’s been the same woman for the past almost 5 years — since the beginning of my LEMTRADA journey. She’s been with me as I transitioned from a cane to a walker and finally to a wheelchair. She’s been with me through multiple hospital stays and two several months-long inpatient rehab stints (she came there to collect the labs). She’s been there through two moves — one from my parents’ to my new apartment, and from my apartment back to my parents’. She’s been with me as I had to stop driving. She’s been with me as I had to file (and get approved, thankfully) for SSDI.

Though she doesn’t know it, she’s represented an oddly comforting consistency over the past 5 years. Maybe it’s the Taurus in me — who knows. The LEMTRADA labs represent a benchmark of sorts. They are a timeline of my sad slow decline, post-LEMTRADA. Everything that happens in my life now is filtered through that lens.

LEMTRADA didn’t work for me. In fact, I had to begin another DMT (Ocrevus) after my final infusion in 2016 (in a perfect world, this shouldn’t have been necessary). That said, the labs are also a bitter reminder of how LEMTRADA failed me.

The drug “rules” require that for four years after our final infusion (mine was February 2016) we are monitored monthly to ensure that LEMTRADA isn’t fucking up our organs, system, etc. (any more so than it already viscerally has for me). I am grateful that my thyroid and kidneys have been spared from the drug’s grips over the past five years — a possibility I was warned about when I signed my life away prior to starting LEMTRADA in 2015. I caught a break, after all, I guess.

So, February 2020 is the end of my four year monitoring period. It’ll be the official end of my LEMTRADA journey. The end of an era. I feel oddly sad.

It’s weird.


Episode 40 | “Everybody’s a Celebrity”: Talking MS with Dr. Boster — feat. Dr. Aaron Boster, MD

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Dr. Aaron Boster, MD

Tune in to Episode 40 of the Myelin & Melanin podcast!

Join us for another exciting conversation with the incomparable neurologist/MS specialist — Dr. Aaron Boster, MD. Dr. Boster shares his thoughts about: his MS DMTs of choice; what DMTs he’d never recommend for certain MS patients; MS hacks he’s learned from patients over the years, and just general love and light. 

Find him on Twitter and YouTube @AaronBosterMD.

Check us out, stream and subscribe to the podcast on Apple Podcasts, Spotify, Google Play, Stitcher or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on! You can also find us on YouTube.

All About LEMTRADA: Reboot & Heal

Hello all!  Have you have had a chance to listen to episode 8?

Making the decision to choose the right therapy best suited for YOU is difficult.  Some days this thing called MS responds in such strange ways, it’s hard to tell what would be the best choice! This week we wanted to separate Lemtrada from the other therapies we’ve discussed and share our individual experiences.

Both of us have taken 2-3 therapies and we felt it was important to separate Lemtrada from the others.  One reason is that it’s considered a newer DMT used to treat MS (only FDA approved within the past 5-10years).  In fact, Daana was the first patient in Wisconsin to be infused with Lemtrada.   I believe I was the sixteenth patient from my neurologist’s office.  So, yes, this is certainly viewed as NEW.

The fears and anxiety of any treatment are normal, of course, but to include them in something that has a tremendous amount of preparation (before and after),  can leave you jittery.  Not mention the uniqueness of Lemtrada.

Remember, if you decide to make this therapy your choice to treat MS, ask your prescribing doctor questions!  Nothing is silly and it is better to ask before diving in head first.  Should you choose Lemtrada it would be helpful to:

  • Be your own advocate
  • Ask questions (I can’t stress this enough)
  • Do your research and decide if this is best for you
  • Talk to your support network
  • Join the Lemtrada Facebook group
  • Stay positive
  • Breathe, you will get through this
  • Follow your prescribing doctor’s  protocol
  • Call Genzyme and ask questions (they are the pharmaceutical company that will provide this therapy to your doctor)

Read more about Lemtrada on the Sanofi Genzyme website for more detailed information:

A few things I wanted to mention…if you do decide to have this infusion: be aware of any changes that may occur in your body. You are not paranoid or being a hypochondriac.  It is very important to note any change that is out of your normal way of feeling.  This is to ensure that your treatment plan runs as smoothly as possible.  The various delayed side effects are NOT something that happens to everyone.  Let me stress, it has happened to someone, therefore, it’s our understanding that pharmaceutical companies are required to report these occurrences.

*We are not doctors.  We’re just two gals that chose to take control over their MS and select a therapy that worked best for us!

Until next time.  Episode 9 will be here before you know it.  In the meantime, listen to 8 & catch up on any episodes you may have missed.

Find us on Facebook, Instagram, Twitter and now a new YouTube channel!

D & D