IVIG: Success or Failure?

By Janice Koehn

2 min read

I’d been living with myasthenia gravis (MG) for about 3 months. The speech problem was now intermittent, but I still had minor issues with swallowing.

My breathing problem had improved and I wasn’t as scared as before. My muscle weakness had improved some. Every so often the nerves in my forehead would set off a lightning storm. By that, I mean they would fire so much it felt like an electric current flowing through my forehead.

My husband told me the twitching was so pronounced he could see it. It would come on fast, then just as quickly, fade. I felt like things were leveling out a little, except I still had no improvement with my eye.

Starting my infusions

The insertion of a peripherally inserted central catheter (PICC) took place and now I could prepare for the massive bags of medicated IV fluid for the intravenous immunoglobulin (IVIG).

The home health nurse came to my home to administer the fluids, but first, we had to get the paperwork out of the way!

Once we started the infusion, I was able to work while she monitored the IV and me. With such a large volume of fluids running in a short amount of time, I had a few quick trips to the restroom. Still, I was a little anxious to see if this drug will help me get that right eye to finally open.

My independence was threatened

The IVIG took a few hours every day for 5 days. About the fourth day, the home health nurse told me the PICC line wouldn’t be coming out after all as I had expected. I broke down and cried like a baby. I know I shouldn’t have been so emotional about it, but I was.

I have trouble accepting the changes in my body and it's impacting my ability to be the tough, independent woman I believed myself to be. I was a strong farmer’s daughter. I worked on the farm growing up and did many chores most other people wouldn’t even dream of.

Though it had been years since I worked like that on the farm, I carried that hardworking tradition with me into my nursing career. Now that independence was threatened even more. I wouldn’t be able to swim, pick up my grandchildren with that arm, my dog wasn’t even supposed to be on my lap.

Therefore, we called the neurologist later that day after the nurse had gone. Thankfully, he said the nurse was mistaken. Once the medication was infused, the PICC could be pulled. Yay! Now to see if it really works.

The treatment didn't work

I’ve had trouble with edema for a few years now, but this infusion really bloated me with fluid. It took a few weeks to get rid of the excessive swelling in my extremities, but it finally subsided.

During this time, I was waiting and waiting for my eye to open and focus without double vision. It never happened. The IVIG didn’t work for me. Talk about disappointment and frustration.

Again, I cried. I was having so much trouble working, watching TV, interacting with family, and I hadn’t driven since this nightmare started. I guess it's back to the neurologist to come up with another possible solution.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Myasthenia-Gravis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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jasgeer Member
I had one treatment cycle (3 days on IVIG infusions) while in the hospital at the end of June. It did little or nothing to improve my symptoms and the Neurologists at the hospital decided to change my treatment to Prednisone when my diagnosis changed from Miller Fisher to MG. They ramped up the Pred to 40mg per day and my double vision became first controlled and then disappeared. After a couple of months my Neuro reduced the Pred to 30mg per day and some of the symptoms returned. I was faced with a decision to start on IVIG infusions every 3 weeks and my Neuro said it could take 6 months or longer -OR- join a clinical study for Zilucoplan. I opted for the later and currently my symptoms have reduced more to the level I experienced when on 40mg of Pred.
1. Jazmin Clayton Moderator
 Hello, I am someone who has had Myasthenia Gravis for 10yrs now. There are so many different treatment options for you and your provider to discuss and figure out which plan is best for you. From my own personal experience I used to get 1 round (1 week) of IVIG every 3 months. I also didn't see results right away and grew very frustrated, but after giving it some time, I've noticed a huge difference. Now I get IVIG for 1 day every 4 weeks.
Juliana Texley Moderator & Contributor
Thank you for writing this honest description. While we all hope for quick and straightforward treatments, that sometimes doesn't happen with myasthenia gravis. You've seen that among the members of this community that the results of treatments vary greatly. And with MG, some take a very long time before improvement is obvious. (IVIg might have more effect in the future. My husband really resisted it and felt it had not helped much for a long time, but now admits it is part of his path to remission.) You have good communication with your medical team, and that's great. I hope you can get some encouragement from those here who have found the right medication and a way to move forward more quickly. Juliana (Myasthenia-gravis.com team)