IVIG Is a Key to My Success with LEMS

IVIG Is a Key to My Success with LEMS
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We’ve all been there. Our doctors suggest a new treatment for our rare disease, and after consulting with other patients through social media, we decide that the option is too scary.

I did this with intravenous immunoglobulin (IVIG) replacement therapy. For more than a year, I held my neurologist off from adding it to my treatment plan for Lambert-Eaton myasthenic syndrome (LEMS). After reading multiple Facebook posts about patients getting aseptic meningitis, this chronic migraine sufferer decided there was no way I would take the chance of subjecting myself to more insane amounts of head pain.

I already had experienced intense head pain for two weeks straight after a traumatic lumbar puncture leading up to my LEMS diagnosis. My spinal fusion and Harrington rod prevented me from getting a blood patch for relief. My headache was due to a spinal fluid leak caused by two needle punctures and a tap gone terribly wrong. Sign up for more intense head pain from IVIG? No, thank you.

I told my neurologist I’d consider IVIG if I got to the point that LEMS stopped me from walking. I thought that would be the worst thing I could experience.

Then I found I couldn’t swallow food or my meds. Soon after, my voice changed and I didn’t sound like myself anymore. My neurologist diagnosed me with dysphagia and sent me to a speech therapist.

The speech therapist noted that my muscles were overcompensating and I was “double swallowing.” I was given exercises to help my autonomic muscles relearn swallowing. All the exercises did was cause extreme pain in my neck. My speech therapist told me to stop doing the exercises because they shouldn’t cause pain.

My neurologist told me it was time to start IVIG. If I didn’t, my LEMS was going to progress. The major concern was that my diaphragm muscles would be the next to stop working.

My neurologist’s specialty is migraines and she understood my fears. The plan we put into place included:

  • IV hydration before and after each infusion.
  • Pre-meds, including antihistamines, acetaminophen, and anti-nausea medication. (IV steroids can be added, but my LEMS symptoms worsened on them.)
  • A slow infusion rate.
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Dawn DeBois says her IVIG treatments have improved her life. (Courtesy of Dawn DeBois)

The loading dose of 2g/kg over five days is not easy. It will leave your head pounding. I resorted to taking acetaminophen with codeine on the last two days of treatment, but the pain was nothing compared to my spinal migraine. I knew it wasn’t aseptic meningitis. I just kept hydrating and resting.

When my IVIG recovery was done, everyone started commenting:

“Dawn, your skin tone looks great!”

“You have more energy than I’ve seen you have in years!”

It wasn’t just what people were saying that made me willing to go through the “IVIG hangover” again. It was what I was experiencing that made me a believer.

My neurologist told me not to expect any real difference in symptoms for months following the start of IVIG treatment. But about a week after my first round, I swallowed a spoonful of ice cream and my throat got cold as the ice cream slid down. That hadn’t happened in years. The swallowing disconnect between my nerves and muscles was starting to reconnect after one treatment. I could taste food better, too.

The biggest bonus is the amount of energy I gain from my rogue antibodies being stopped from attacking when my IVIG antibodies have taken over. I finally feel like I can take on the world again. When the treatment starts to wear off at the IVIG half-life of 3½ weeks, my energy immediately starts to wane.

My friend Christina Caron has chronic inflammatory demyelinating polyneuropathy and has been getting IVIG for 19 years. She hasn’t had aseptic meningitis once. The reality is that less than 5 percent of patients get aseptic meningitis.

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From left, Dawn and Christina Caron take the sting out of a treatment by infusing together. (Courtesy of Dawn DeBois)

I have learned from other patients that continuing acetaminophen, antihistamines, and fluids with electrolytes for about 72 hours helps keep the IVIG hangover to a minimum. (Make sure to consult your doctors before taking any medications.)

Setting aside a few days a month for treatment and recovery to live my best LEMS life is worth it. Plus, I get to enjoy eating ice cream again!

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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 Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.

When Dawn was diagnosed with Lambert-Eaton Myasthenic Syndrome in 2016, she realized how lonely it was not having anyone to talk to that understood her illness. Her goal with ‘LEMme Tell Ya’ is to let that be a conversation about LEMS that other patients can look forward to each week. Dawn will share her own stories of being a LEMS patient and one who also deals with having an invisible illness along with multiple autoimmune diseases. Dawn’s prior work experience in pharmaceuticals and public health education is what led to her desire to educate others about her ultra rare diagnosis of LEMS. This desire, combined with her love of writing, led to her blog, The Battle Within. Dawn is also a contributor for TheMighty.com. When able to, Dawn volunteers for various pet rescue organizations. She has three adult sons and resides in Maine with her own rescues: a pug, Rocky, a beagle mix, Anna, and two cats, George and Wylie.
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When Dawn was diagnosed with Lambert-Eaton Myasthenic Syndrome in 2016, she realized how lonely it was not having anyone to talk to that understood her illness. Her goal with ‘LEMme Tell Ya’ is to let that be a conversation about LEMS that other patients can look forward to each week. Dawn will share her own stories of being a LEMS patient and one who also deals with having an invisible illness along with multiple autoimmune diseases. Dawn’s prior work experience in pharmaceuticals and public health education is what led to her desire to educate others about her ultra rare diagnosis of LEMS. This desire, combined with her love of writing, led to her blog, The Battle Within. Dawn is also a contributor for TheMighty.com. When able to, Dawn volunteers for various pet rescue organizations. She has three adult sons and resides in Maine with her own rescues: a pug, Rocky, a beagle mix, Anna, and two cats, George and Wylie.
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6 comments

  1. Mako says:

    How long did it take you to heal from ivig migraine! How did you know it was not aseptic meningitis? I’ve been suffering for 2 months now from a very painful migraine post ivig and nothing is working to help calm it down . I wish I knew it has this awful side effect i wouldn’t have go for it

  2. Dawn DeBois says:

    Mako, I apologize for taking so long to respond. I’ve been travelling and then had treatment.

    My migraines, at the most, stayed only a week. If you are going on 2 months, I would definitely get that checked. Sometimes they can give you a “Migraine cocktail” that helps you get over the hump. However, please let your IVIG prescribing doctor know.

    There are many things they can do to help prevent the migraines: iv hydration before and after, benedryl, pain meds, and sometimes they add steriods to the IV. My neuro is a migraine specialist and she knew my fears, so, we played with the pre and post meds to find what worked. Also, drinking fluids with electrolytes for days after the infusion helps.

    I’m so sorry you’ve been suffering so long. Please let me know when you are feeling better!

  3. Mako says:

    Thank you for your response , I hope your feeling better! They did everything to help ease the pain but still the same I’m really frustrated I do not know what that ivig had done to my head. It’s been almost 3 months and the tightness in my forehead and eyes is killing me. I hope I find a relief soon. I had an mri it came back normal still afraid to do a spinal tap since I don’t want more pain in my head or my back. Let me know your
    thoughts about the spinal tap since you had one before

    • Dawn DeBois says:

      I am so sorry to hear you are still in pain. As difficult as a lumbar puncture can be if you don’t lie flat for the next 24 hours after, I would highly recommend allowing them to do the puncture as what they find may give insight to your prolonged reaction.

      My advice would be to request a prolonged stay in outpatient to remain flat after the procedure as well as making sure you have someone at home to care for you while you lay flat to let the puncture close. I’ve had 2 done. One went smoothly and one did not. Because you are in such constant pain already, I would request extended help to assure the puncture can seal so as to prevent the spinal migraine.

  4. Tom says:

    Dawn,

    Do most LEMS patients feel a response from IVIg in about a week like you? I am wondering how long it usually takes before knowing if IVIG works. Thank you!

    • Dawn DeBois says:

      Hi Tom,

      My neuro prepared me for not seeing a lot of improvement for months after starting IVIG. The fact that I had such an immense improvement in my swallowing after my first loading dose was what gave me the determination to deal with the side effects. Friends who only saw me every few months would comment each time on how much better I kept looking/acting as time went on.

      That being said, for some LEMS patients, IVIg hasn’t worked for them. I don’t know if the benefits vs the side effects didn’t make sense to them to hang on long enough in treatment? I do know for some that it didn’t work, plasmapheresis has helped, and for others, Rutixan has been a lifesaver. I’m a huge proponent of IVIg; but, just like how LEMS presents differently for many patients, their responses to med protocols response will be different as well.

      Thanks so much for reading my column and for your question!
      Dawn

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