Our Daughter Is Seeing Positive Results From Rituxan

Our Daughter Is Seeing Positive Results From Rituxan
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Receiving a diagnosis of Lambert-Eaton myasthenic syndrome can be overwhelming. For many, the journey likely entailed multiple visits to doctors and many years of waiting.

When we received our daughter Grace’s diagnosis, we learned there is no cure, but we were encouraged upon discovering that numerous treatments are available to improve her quality of life.

It took some time to find a treatment that gave Grace significant, life-altering results.

Ruzurgi (amifampridine) or Firdapse (amifampridine) in conjunction with Mestinon (pyridostigmine) is often the first line of defense in helping LEMS patients gain strength and manage symptoms. Ruzurgi has allowed my daughter to get out of bed in the morning. Without it, she would be hindered significantly.

But after these medications, what works best is very person-specific. Many seem to try intravenous immunoglobulin (IVIG) therapy next because it can positively affect the immune system by flooding it with antibodies.

Grace’s neurologist recommended IVIG. It definitely gave her a boost of energy and balance, but she was still hindered in her abilities.

I am grateful that Grace’s doctor has never been too proud to ask for his colleagues’ professional opinions. He first invited Mayo Clinic doctors to help diagnose Grace. He also referred her to a pediatric rheumatologist so he could consult with her about the next course of treatment.

Grace’s neurologist and rheumatologist mutually agreed that it was in Grace’s best interest to start a course of Rituxan (rituximab).

Rituxan is administered via infusion. It suppresses the growth of B-cells, decreasing the amount in the blood, which in turn hinders them from attacking the neuromuscular junctions.

The first round of Rituxan is given in two doses, two weeks apart. The morning of the infusion, nurses start Grace with oral Tylenol and Benadryl.

They then run her IV and give her a drip of Solu-Medrol (methylprednisolone), a corticosteroid that can lessen or prevent allergic reactions to Rituxan. This steroid leaves Grace with a metallic taste in her mouth, so we always have gum or lollipops on hand.

Once the steroid is administered, nurses begin the Rituxan drip. This is when we settle in for the day. Typically, our days at the hospital run about 10 hours long.

Grace has experienced impressive results from Rituxan, including:

She has more energy

Before starting Rituxan, Grace would express how tired she was throughout the day. She now has significantly more energy. Not only does she have more energy, but also it is more consistent, with fewer highs and lows throughout her day.

She no longer slurs her words

Grace usually wakes up in the morning with slurred speech until her Ruzurgi kicks in. Since her second dose of Rituxan, she has been able to speak clearly from the moment she wakes up.

Rituxan kicks in faster

It normally takes Grace about 35 minutes to feel the effects of Ruzurgi, but with Rituxan, she is able to get up after about 15 minutes. 

She has a sturdier, faster walk

Most notably, Grace’s ability to walk unassisted has significantly increased. She is able to walk faster, farther, and more sturdily without becoming tired.

She is more productive throughout the day

Because of the increased energy, Grace is able to accomplish more throughout the day, which brings her much hope as she looks to her future.

Although the infusion is an extremely long day, the results of Rituxan have proven to be well worth the effort. We have yet to see any adverse side effects.

This treatment has given us hope for her future and encouragement for today.

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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.

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4 comments

  1. Gisel M Burgos says:

    Hello, my daughter was diagnosed with LEMS September,2020. She is on Prednisone and Ruzurgi. Also taking pgysical therapy 3 times a week. Was getting IVIG treatments at home for awhile which helps alot but, because of change of insurance through her father’s work there has been a pause and I see her getting slower and weaker again. Her doctor is not so happy with where she still is. He wants to consider other medications. This post will be very helpful and will show it to her neurologist. And then on the other side of tge spectrum I have been researching homeopathic ways. Detoxing, vitamins, getting rid of sugars, just taking the healthier path because it makes sense of what homeopathic doctors explain about autoimmune diseases. That medications mask the root of the problem. That there was a virus or infection or bacteria in your organs, body that maybe you still have in yoyr system and you need to help your body get rid of it by detoxing. All sounds great but easy said than done. I would like my daughter to try anything before being inprisoned to medications all her life. But, she is an eight year old picky eater and strong hardheaded lol. Many of these natural treatments are nasty tasting natural drinks, pills, etc. And prohibitions of those things she likes. A grown up could go through a detox process and eating lifestyle change. It’s so frustrating because regular doctors tend to prescribe many medicines after medicine but I see homeopath’s want to get to the root of the cause and work from there. Overwhelming! I pray to God that a cure will arise. That somehow my girl will outgrow this!

    • Lori Dunham says:

      Hello Gisel. My daughter was 14 when she was diagnosed. I understand how hard it is to adjust their eating habits and taking the homeopathic route when you have a picky child. We have been able to go gluten free mostly because she was having alot of digestive issues which the gluten free definitely helped. My main goal with the GF is trying to protect her from developing another autoimmune disease on top of this one, so thought gluten free would be worth trying. I have also thought to try the homeopathic route but need to look into it more as well. The rituxan has made a huge difference for Grace. IVIG helped but it was inconsistent and she was still exhausted all the time. Rituxan has given her so much energy and she is able to walk so much stronger and faster. I hope you can talk with your daughter’s doctor and hopefully try some other treatment options. I also pray for a cure!!!!

  2. Joyce Crawford says:

    Hi Lori,
    Thank you for posting Grace’s treatments. I have not had good results with my current treatment and poor communication with my neurologist. Due to all that, I just found a new neurologist that I think has treated LEMS patients before. Your information gives me hope that I will still be able to get better, as I have been sick for about 10 years now, but was only diagnosed with LEMS 6 months ago. Please continue to keep us up on Grace’s condition.

    • Lori Dunham says:

      Hi Joyce. I really hope your new neurologist will listen well to you and you can find a treatment plan that gives you more of your life back. The rituxan has made a huge difference for Grace.

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