Starting Down the Lemtrada Road

[This is an updated version of my column that first appeared on http://www.multiplesclerosisnewstoday.com]

The final drip of my first week of Lemtrada infusions will drop in about 30 minutes.  The headline is: It was a good week with no significant problems or discomfort.  I’ll be writing about this experience, in detail, in my next column.  But first, for those who aren’t yet up to speed on my journey, some background.

A few weeks ago I wrote about how Lemtrada has been successful in stopping disease progression in folks with relapsing-remitting multiple sclerosis and is also being used by some people who have the progressive forms.  There have also been many reports of some people who have had some symptoms improved.  But, I was writing about those reports.  Now, it’s personal.

Treatment Starts Before the IVs

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 any increased temperature.

The Infusions

The five days of infusions 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 guard against hives, rashes and the like.  I’m to receive 1,000 mg on the first three days, 500 mg on the second fourth and 250 mg on the final day.

Next comes 25-50 mg of Benadryl by IV.  Finally, the star of the show…the Lemtrada – 12 mg over four hours.  Oops, not done yet.  After all the drugs 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 several 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 water). My neuro, and most “Lemmies” who’ve had these infusions, say it’s the best thing to do to limit uncomfortable side effects.  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 also 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 pates 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

For a time I’ll be continuing the meds that I began before treatment started and I’ll be taking Prednisone to taper off the IV steroids.

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 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.

So, 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 about another week.

 

 

 

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7 thoughts on “Starting Down the Lemtrada Road

  1. u2hearts

    Wow. I thought rituxan infusion was bad. Nothing in comparison. It’s two infusions 5-7 hours depending on infusion issues second in a 2 week time frame. Also showed promise in progression for those of us with secondary progressive MS. Lemtrada scared me 😐. I’m very interested to hear how you do with it. Best of luck.

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  2. Victoria M. Kircher

    I pray and wish You the Best. Let me know how you do. I to have had MS for 30+ years. So I am really interested in how you do! VMK

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  3. Karen

    After reading your post about starting Lemtrada, I am looking for your follow up adventures, however I can’t find them. Can you help? Thanks!!!!!

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      1. Karen

        Thanks Ed.
        I may be headed down the Lemtrada path. I see my neuro in a few weeks.
        In the meantime, I will be following you and hoping for the best😊
        Karen

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