My Lemtrada Journey: 6 month report

It’s been a little over six months since I completed Round 1 of my Lemtrada infusions, so it’s time again to ask myself, “How am I doing?”

The answer: I’m not sure.

For many years, my brain MRI has remained unchanged. I can’t remember the last time I had an exacerbation (something bad enough to require steroid treatments). It was, literally, in the last century. But my walking has slowly, but steadily, declined.

So, I’m really not sure how much of an impact any of the disease-modifying drugs that I’ve been on since 1996, including Lemtrada, have had on my MS. I like to think that all of the shots, pills, and infusions that I’ve been treated with over the past two decades have, at least, slowed the progression of my disease, but it’s really hard to know for sure.

Enter Lemtrada

As you probably know, Lemtrada is designed to halt further progression of MS. In addition, some patients have had some symptoms reversed. But that benefit wasn’t expected, it just sort of appeared during the clinical trials. On the other hand, more than a few patients are reporting a variety of negative symptoms following their infusions.

My 6-month timeline

The first three months post-infusion were a real roller coaster. The lowest point on the ride was at about two months post-infusion, when I developed a fever, slight headache, and a cough. Naturally, my energy level also dropped. It was diagnosed as strep, and after downing antibiotics for about 10 days, I was much better.

Around the five-month point, my wife thought I was walking better. Today, just past six months, I think I am — sometimes, but not always. I also can flex my left foot up from the ankle just a little, and I think that’s new. Cramping in the insoles of my feet, which took place almost every night when I got into bed, has been significantly reduced. So, all positive stuff.

But, on the other side of the coin, I developed an aching pain in both hips around mid-February. At times, that pain would shoot down one or both legs when I put weight on them. It’s been worse in the mornings, particularly if I’m trying to get up from squatting down. But, is this drug-related, or is it something else? My neuro says it’s not related to the infusions. Some Lemtrada patients have suggested that it’s the feeling of my body “making new bone marrow.” I just don’t know.

This pain has slowly eased since it began four months ago. That improvement may be related to receiving physical therapy treatments in April and May and getting back into the swimming pool in June. That physical therapy and the swimming may also be responsible for the mobility improvements that I mentioned earlier. Or is it the Lemtrada? Or, maybe it’s a combination of both.

The six-month mark is the time at which, I’ve been told, the ups and downs tend to level out or to swing upward. That seems to be the case with me. So, I guess it really doesn’t matter whether it’s Lemtrada, or PT, or swimming that seems to be helping, or if it’s the drug or the natural course of my MS that’s responsible for my low points. I’ll continue doing what I’m doing and hope for the best.

(A version of this first appeared as my column on www.multiplesclerosisnewstoday.com)

 

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3 thoughts on “My Lemtrada Journey: 6 month report

  1. Dianne

    I have MS. I was diagnosed with relapsing remitting when I was 27. I have taken NO drugs until I started Fampyra 10 years ago. I had NO symptoms of MS after my first relapse at age 27 for 20 years. I REFUSED to take ANY MS drugs for 20 years because like you said,’How can you tell if they are working?’ and ‘How do you know if the drug is actually slowing it down?’. The pharmas place great fear in people with MS that the symptoms will get worse. But the truth is…you may never have a symptom again. That is the mystery of MS. Everyone is different. I refuse to take any drug unless it HELPS the symptoms. Otherwise you will never know if all the grief you experienced by bombarding your body with these horrific drugs with side effects ever actually helped you. Stick with a good lifestyle and exercise…NO SIDE EFFECTS…except for trying to keep your body healthy!

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    1. The MS Wire Post author

      Thanks for you comment, Diane. We all need to make the choices that we think are best for us and I’m glad that the road you’ve chosen to follow is turning out to be a good one.

      I used Ampyra and found that it helped my walking speed and balance. But the amount of improvement wasn’t worth my out-of-pocket cost. Like you, however, it was a drug where I could see a direct benefit.

      Best of luck,

      Ed

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      1. Dianne

        Thanks for your reply Ed. I have now stopped the Famyra as well even though my drug plan covered the cost. Thats because the good effects were not apparent anymore and I believe our bodies become accustomed to drugs after awhile so Im taking a break from it and may try it again in future. But my point regarding drugs “that stop progression of MS” remain unchanged because NOBODY can predict whether your MS or my MS or anybodies MS will ever progress or just stabilize like mine did for 20 years. All pharma drugs except Fampyra are based on people with MS having fear of the unknown future of the progression of the MS and you just DONT KNOW whether the drugs are doing ANYTHING for you

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