• IVIG pre-medications

    Posted by Ashley on October 7, 2020 at 7:30 am

    Good morning all!

    Hope you all enjoyed your weekend!

    For those who receive IVIG, I know we have talked about the pre-medications we receive before treatment in a couple of other threads, but I wanted to start a new thread specifically for this topic. I think it may be easier for those who are new to the group to find this topic and I’d like to hear what works for everyone.

    I know we have a lot of new members lately who are in the process of getting a diagnosis and starting treatment for LEMS. I would love to offer them advice for when they receive IVIG for the first time.

    Here are some of my tips:

    • It may take a while to find what pre-medications work best for you! I know it can be discouraging to experience severe side effects from a treatment, especially if you are unsure what to expect. The first week I got IVIG was brutal for me because I experienced migraines so bad that I could barely open my eyes. I wasn’t sure if I wanted to continue treatment because of this and almost gave up… but I gave it a couple of months to find a routine that worked for me and I’m glad I did!
    • One of the most effective ways to prevent post treatment migraines was the introduction of 500mL of saline before and after my infusion. Staying hydrated is key! I keep several different electrolyte powders around to mix with water and bring the largest cup I have for my treatment days. If you have dysautonomia, be sure that whatever you choose to hydrate you contains sodium and potassium. High sodium content is necessary for anyone with dysautonomia! My personal favorites are ones recommended by Dysautonomia International and include Normalyte, Drip Drop, and Liquid IV. Low sugar Gatorade will also work!

    My pre-medication regimen includes 500mL of saline prior to my infusion followed by 50mg of Benadryl, 500mg Tylenol, and 25mg solumedrol. At the end of my infusion, we follow with another 500mL of saline.

    What is your pre-medication regimen?

    price-wooldridge replied 3 years, 4 months ago 3 Members · 3 Replies
  • 3 Replies
  • price-wooldridge

    Member
    October 7, 2020 at 8:28 am

    Great info Ashley. My pre infusion routine includes beginning hydration one day in advance with water containing electrolytes. This could be Fiji water or Smart water. 30 minutes prior to infusion, Benadryl and acetaminophen. We then push Zofran (for nausea) before hooking me up to the immunoglobulin. Post infusion I continue with additional water with electrolytes.
    I was very interested in those powders you mentioned, but noticed they contain glucose. As a diabetic, it’s important to watch for that in places you wouldn’t expect. For that reason, I personally would probably not use those, or use them with care.

  • ruth-nixon

    Member
    October 31, 2020 at 3:52 am

    I just wanted to comment on some of the pre-medication advice you have written about here. I have IVIG infusions every 5 weeks and have suffered from the most crippling light, noise and touch sensitive migraines and vomiting every time for the last 2 1/2 years. This time I tried drinking electrolyte drinks throughout. Oh my word. The difference is phenomenal. I am so thrilled. I barely even have a headache. I am finding so much invaluable advice from this forum. It is making the whole Lambert Eaton journey easier to find out information from people who are going through the same thing. Thanks for sharing your experiences. If has helped do much.

  • price-wooldridge

    Member
    October 31, 2020 at 12:47 pm

    @ruth Ruth, that’s fantastic. I’ve been doing IVIG myself for almost two years and still seem to be tweaking what I do. I too just recently added electrolyte drink to my regimen around IVIG. In my case I’ve had bad muscle spasms and cramps. We do what we need to, and it’s often trial and error. So glad this is working for you!

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