My Lemtrada Coaster Has Been Rolling

Lemtrada roller coaster

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About two weeks ago I wrote about my roller-coaster ride being pretty smooth since my first round of Lemtrada infusions ended in early December. Well, the loops are now looping.

Month two post-infusion began with a good lab report, but also with an appearance of the up-down fatigue monster. On several days it was very tough getting out of bed. Other days I felt good when I woke up, but then I took a dive in mid-afternoon and had to head back for a nap for a couple of hours. Many nights involved getting up for multiple “pee trips,” which didn’t help my energy level. Add to this one middle of the night and one middle of the afternoon episode of fever and chills (which were handled with 800 mg of Ibuprofen) and it’s made for an uncomfortable ride. One day I finally listened to my body and spent the whole day in bed. It helped, but it didn’t stop the coaster.

Getting checked out

I didn’t realize it, but a low-grade fever continued for several days. During this time I developed a dry cough and I had a minor headache that was most noticeable in bed at night. Being away from home, I made a trip to the local ER where the doc listened to my lungs, swabbed my nose and mouth and ordered two chest X-rays. Three hours later I was told my lungs were clear and the X-rays were negative, but a swab had tested positive for strep. Huh? My throat wasn’t sore or red. I was given a prescription for a 10-day course of amoxicillin and that was it. The antibiotic took care of the fever and my energy has returned, but the cough is hanging in and the nighttime headache continues. The nightly bathroom runs have decreased the past couple of nights, but only from a high of about eight each night to around four.

Lemtrada and herpes

There’s been talk on the Lemtrada Facebook page about whether some Lemtrada patients have re-activated the herpes-4 virus in their bodies. Part of the Lemtrada protocol is taking the anti-viral drug acyclovir. I was told that was to prevent herpes, but I wasn’t told if they were aiming at a specific type. Herpes-4 is the Epstein-Barr virus, also known as mononucleosis. According to the Centers for Disease Control, many people become infected with EBV in childhood, appearing as a mild, brief illness. But the virus remains with you and it can reactivate. And people with weakened immune systems are more likely to develop symptoms if it does. I wonder if there’s a connection here.

Was it the right decision?

Is my roller coaster ride finished? My neurologist can’t say. This uncertainty makes me wonder if I made the right decision, at age 68, to switch from Aubagio to Lemtrada. My MS lesions have been stable for years. Though my mobility has slowly and steadily decreased, I was never really faced with the problem of not having a good idea of how I’d feel each day. What was once certain is now uncertain. But, I’m on the Lemtrada highway now. No U-turns are possible. I’ll just have to see if the rewards eventually outweigh the risks.

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.

 

6 comments

  1. Mark says:

    Thanks for your update. I finished my round 1 infusion of Lemtrada on 8/12/16. I have kept a journal of my Lemtrada journey starting 1 month pre-infusion. Roller coaster is correct, in my case there is much more good than bad. My baby steps are always getting bigger and my set backs smaller. I am 54 and have had MS for 23.5 yrs. Mobility is fair/weak at best.

    • Ed Tobias says:

      Hi Mark,

      It sounds as if we’re on the same track (ha!). The ride smoothed a few days ago and I’m feeling pretty much like my old self. Now, let’s see if a couple of mobility improvements might head my way.

      Ed

  2. Marilyn says:

    Hi Ed: Hope you are feeling better.

    Thank you for all the updates, it is a scary time when we change to another medication, I am currently on Aubagio; but like you my mobility has been effected lately, slower and can not walk too much without sitting and resting. Overall I’m doing good. I was diagnosed in 1993. I am 59, thank you for sharing your journey. I’ve been looking into Lemtrada, still a little scary not sure if I want to take the leap. I look forward to your updates. Take care Marilyn

    • Ed Tobias says:

      Thanks for your note, Marilyn.

      Yep, I’m on the upswing again. Lemtrada is a very interesting journey, as documented by the various patient posts on the Lemtrada page on Facebook.

      I’ll keep everyone here posted as time passes.

      Ed

  3. Stefanie says:

    Hi Ed, thank you for all the useful Lemtrada information you provided before my first round of Lemtrada! Your infusion report made me feel more confident than before about Lemtrada..

    My journey is not yet like rollercoaster ride, i feel it more like a press brake in my head since end of infusions. Meanwhile it is getting better, however i still need to take some ibuprofen pills every day.

    Additional information: i am 42 years and female and i also took AUBAGIO and had seversl lesions in MRI. My walking decreased to a maximum of about 50feet. I hope Lemtrada will help all of us!

    Stefanie from Germany

    • Ed Tobias says:

      Hi Stefanie,

      I’m glad that my column was useful.

      Yes, it should get better. I had a headache in the back of my head, which was more pressure than pain, every morning when I woke up. It eased during each day but then returned. It finally went away a few days ago, a little over two months after my infusions ended.

      I’ll continue to write about my progress every several weeks.

      Ed

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