My daughter is showing progress after years of LEMS treatment

Note: This column describes the experiences the author’s daughter had with various medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

Five years ago, our daughter Grace began her journey with Lambert-Eaton myasthenic syndrome (LEMS). She was diagnosed at 15 years old, after nine months of unexplained symptoms. From that point on, her health deteriorated rapidly. In a few short months, she went from walking and being active to needing a wheelchair.

I was desperate to know what this disease would mean for Grace’s future.

It took time, but we’ve finally found the treatment plan that works best for Grace. In addition to 70 mg of Firdapse (amifampridine), Grace takes 180 mg of Mestinon (pyridostigmine) and 50 mg of Imuran (azathioprine) daily. She also gets Rituxan (rituximab) infusions every six months.

Yet even with this treatment plan in place, I’m desperate to know how my daughter’s life will look going forward. Of course, that’s a difficult question to answer. No two LEMS patients react exactly the same to medications or even present the illness in the same way.

Celebrating the wins

When we started Rituxan infusions, Grace was unable to walk from our car to the hospital; I had to drop her at the front of the building. The staff there would put her in a wheelchair, and she’d wait for me to park.

But last week, for the first time, she was able to walk with me from the parking garage through the massive hospital complex to the day facility. That was a huge accomplishment.

And while the Rituxan infusions usually exhaust her, with nurses afterward bringing her back to the car in a wheelchair, she’s had a breakthrough: Recently, after her nine-hour infusion, Grace had enough energy and strength to walk out of the hospital on her own.

Her progress is remarkable.

A day in the life

It’s now been three years since Grace started having Rituxan infusions. I see what living with LEMS looks like for her — at least for now:

• Grace can walk independently again, but tires easily.
• She no longer trips and falls as she did before her diagnosis.
• She can do her job in a grocery store, but needs accommodations to be exempt from some of the more physical tasks.
• She cannot run, jump, or lift her legs easily.
• She can go up and down steps, but slowly and with extreme effort.
• She can drive, but refrains from long distances because of muscle fatigue.
• She doesn’t feel comfortable swimming. She’ll wade into a pool for exercise, but she doesn’t think she can hold herself up in the water.
• She can’t ride a bike.
• She enjoys being with friends, but her energy is limited; when choosing activities, she must be aware of how much energy she can spend.
• She’s attending college full time while living at home.

Mostly, Grace is pretty able. She may expend more effort than most, but if she deems something worthy of her limited energy, she can often accomplish it.

Her life is different from what it was before the onset of LEMS, but with treatment, she’s been able to manage well.

Is there something you can now do with LEMS that you’d once thought wouldn’t be possible? Please tell us about it in the comments below.

Note: Lambert-Eaton News 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 Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.