Starting Down My Lemtrada Road

Starting Down My Lemtrada Road

MS_Wire_Ed_Tobias

Here we go.

This is the week my Lemtrada (alemtuzumab) infusions begin. A few weeks ago I wrote about how Lemtrada has been successful in stopping disease progression in folks with relapsing-remitting multiple sclerosis, and those who have transitioned to secondary progressive MS but continue to have relapses. There have also been many reports of people who have had some of their MS symptoms improved after being treated with the drug.  But then, I was writing about reports.  Now, it’s personal.

Treatment starts before the IV

Two days before my first infusion, I began to pre-medicate to reduce the chance of some side effects. I’m taking Acyclovir to reduce the chance of contracting the herpes virus. Doctors say that Lemtrada treatments raise the chance of getting this virus for some people. The allergy drugs Zantac and Zyrtec are being taken to limit hives and rashes.  I also have on hand ibuprofen, Benadryl and hydrocortisone creme to use, if necessary, to treat any pain, rash, hives or fever.

The Infusions

The five days of infusions actually involve three drugs.  First comes Solumedrol.  My neurologist tells that it serves two purposes.  As a steroid it calms the body’s immune system. But it’s also a histamine blocker, serving as another barrier to hives, rashes and the like. I’m to receive 1,000 mg on the first three days, 500 mg on the second, third and fourth day, and 250 mg on the final day.

Next comes 25–50 mg of Benadryl by IV.  Finally, the star of the show … Lemtrada — 12 mg over four hours.  Oops, not done yet.  After all the drugs are finished, there’s a two-hour “watch” period, during which IV fluids continue.  In all, 7–8 hours each day.  Whew!

Drink up

For the next few months I’ll be drinking lots of water. (That’s going to be tough for this MSer who has spent the past 35 years trying to avoid drinking the stuff). My neuro, and most “Lemmies” who’ve had these infusions, say it’s the best thing to do to limit uncomfortable side effects.  Consistently flushing the toxins and dying cells out of my system, they say, is the best approach to feeling as good as I can.

Watch what you eat

There are some foods that I’ve been told to avoid for the first month after my infusions.  This is to reduce the risk of Listeria.  They include:

  • Hot dogs and deli meats (This will be a hardship)
  • Refrigerated pâtés and meat spreads
  • Unpasteurized milk and dairy products
  • Soft cheese made with unpasteurized milk, e.g. feta, Brie, queso fresco and Camembert
  • Raw sprouts
  • Smoked seafood
  • Raw fish, e.g. sushi (I wouldn’t, anyway)
  • Raw eggs or meat
  • Prepared salads, e.g., chicken salad, ham salad and egg salad
  • Wash all vegetables and fruits thoroughly

And after the infusions

I’ve been told to expect a roller coaster ride of good and bad days for a week or two — headache, body aches and fever — some days feeling like I’ve crashed and burned, and others where I’m feeling very well. After a month I’ll be scheduling physical therapy. After four or five months I’ve been told that I should see an improvement in my overall endurance.

That’s quite a ride for a 68-year-old guy to anticipate, but, as I’ve said several times in writing about Lemtrada, the potential benefit makes the risk and discomfort worthwhile.

If you’re a Lemmie, or planning to become one, your treatment plan may vary, but the basic infusion process should be pretty much what I’ve described.

Now, my fingers are crossed.  Unless I’m really dragging, and at the bottom of the roller coaster loop, I’ll be reporting on my ride in a column in another week, or so.

[Please check out my personal blog at: www.themswire.com]

 

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

12 comments

  1. Sheri Anderson says:

    Dear Ed,
    I wish you all the best in your endeavor!!! I am almost 62, and Desperately Want a Stem Cell Transplant!! After fervently trying to find one, I think I actually may have last night!!! Good Luck, my Friend!!! Sending lots of prayers and Hugs your way!!

    Sheri

  2. Christine says:

    Good luck, Ed! I”m eagerly awaiting your notes on your experience as I think Lemtrada may be the next step for me as I had a progression (relapse?) just before Thanksgiving. And I was doing so well with Gilenya.
    I’m 62, and have been concerned about the side effects of Lemtrada and my ability to deal with them.
    I see my neuro in a few weeks, and since his PA already mentioned Lemtrada, suspect it will dominate our discussion.

    • Ed Tobias says:

      Thanks, Christine.

      So far, so good on day 3. I’m writing this as I’m hooked to the IV. I’ll keep everyone posted and expect to have a detailed report ready for my column next Tuesday.

      Ed

  3. Tony McD says:

    Good luck, Ed! It looks like you’re into this process with your eyes open. This isn’t your parents’ or grandparents’ MS treatment. This is the closest MS has to induction therapy.

    There’s one thing that the FaceBook Lemtrada group makes clear — people don’t complain that Lemtrada doesn’t work (unlike other treatments) but rather that they just don’t like the side-effects. No, it’s not 100% for everyone — especially those with longer standing or aggressive disease — but for those in the “sweet spot” this treatment stops the disease dead in its tracks.

    Please don’t get down if you feel “out of it” in the short-term. That’s normal since your immune system is being completely ablated and it takes time to rebuild. Also, don’t be surprised if you have what looks like a relapse (of an existing symptom) in about 6 months. That’s normal, too, as old scars are affected. This is a two-year treatment protocol — make sure you give it time to work.

    I’ll be thinking of you and look forward to your impressions during your post-injection phase.

    • Ed Tobias says:

      Tony,

      You’re right about the Facebook page but, understanding that people with problems seek places to vent, it’s understandable that there will be negative vibes there. I used their comments as a source of questions to ask my own neurologist.

      Thanks for your advice. I plan to write a summary of my week in next Tuesday’s column.

      Ed

  4. Michelle says:

    Thanks for writing about your Lemtrada experience, Ed. I’ve been on Tysabri for just under 2 years, JCV positive with a titer # that is making my neuro very uncomfortable and he wants me off it soon. I’m meeting with the new MS Specialist next week and Lemtrada is one of the drugs I want to discuss with her. Again, thank you. I’ll be eagerly waiting for your next update. Wishing you all the best!

    Michelle

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