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.
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.
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!
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.