Transitioning From IVIG to Rituxan Infusions Required a Leap of Faith

Trying a different LEMS treatment paid off for columnist Lori Dunham's daughter

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by Lori Dunham |

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We are all on a journey in this rare disease world. Whether we have Lambert-Eaton myasthenic syndrome (LEMS) or care for a loved one who does, our lives have been touched by the debilitating and oftentimes life-changing symptoms brought on by this rare disease.

Those in our community may travel parallel paths, but no two roads look quite the same. While multiple treatments are available for LEMS patients, no two people react the same to each medication. Results vary greatly from one patient to the next.

Some thrive and see fantastic results on intravenous immunoglobulin (IVIG), while others cannot tolerate its side effects or have allergic reactions. Some do great on Firdapse (amifampridine), while others fare far better on Ruzurgi (amifampridine).

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Our Daughter’s LEMS Treatment Allows Us to Enjoy Summer Again

When our daughter Grace was diagnosed at age 14, her neurologist chose the least invasive treatments first. Grace immediately began Mestinon (pyridostigmine) and Ruzurgi. Next, the doctor added monthly IVIG treatments to her regimen.

IVIG helped Grace with symptoms of fatigue. It gave her more stability on her feet and helped her avoid slurring her words. However, the change was only moderate, and she had significant swings in energy throughout the month.

We also had to consider how viable an option IVIG would be in the future as Grace ventured on through high school and college. Spending two days a month getting the infusion cost her time at school, which affected her academics, along with her ability to hold down a job. We had to weigh the costs versus the benefits of the LEMS treatment.

The neurologist referred Grace to a rheumatologist, who suggested Rituxan (rituximab). This is a longer infusion than IVIG, but it’s only done every six months or more in some cases. Most people do not receive both IVIG and Rituxan treatments. However, Rituxan tends to take time to work, so Grace’s doctor suggested she stick with IVIG for a couple of months after starting Rituxan.

Within two months of her first Rituxan infusion, Grace made significant strides in terms of mobility and stamina. It was the first time in two years she wasn’t constantly saying how tired she was. She actually wanted to leave the house to shop or spend time with friends. She was able to make it through an entire day at school.

Once Grace started Rituxan, IVIG did not seem to make any noticeable difference in her mobility, balance, or energy. We were able to wean her off IVIG three months after her first Rituxan infusion.

Rituxan has proven to be the best treatment for Grace, offering her sustained help in managing the varying symptoms of LEMS. Transitioning from one treatment option to another can be nerve-wracking. However, we have reaped the benefits of taking a leap of faith from a good treatment option and finding an even better one for our daughter.

What LEMS treatment works best for you? Please share 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 myasthenia syndrome.

Comments

Peter avatar

Peter

Hi from Sweden, I am 54 years old. I got LEMS in 2014 and pretty much done the same journey through the treatments as your daughter did. I am now on Mabthera/Retuximab infusions like your daughter, and almost feel myself again. It has been about 1.5 years since I started. I only feel tired in my muscles when I really strain myself. I have had no dip between treatments and probably one treatment with Mabthera will last at least 1 year.

I wish you and your daughter Grace all the best.

/Peter

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Lori Dunham avatar

Lori Dunham

It is so nice to hear from others going through the same treatments!!! I hope it continues to work well for you.

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