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My Neurologist Has Asked Me To Consider Adding IVIG To My Regimen To Improve My Quality Of Life. What Are Your Experiences With This Drug?

A MGteam Member asked a question 💭
Salem, VA

I am currently maxed out on the dosages of cellcept and mestonin and am satisfied with my current quality. However, IVIG may be a way to add to the quality and allow me more opportunity to do things longer and not feel tired halfway through the mall when shopping with my wife. Looking for reactions, pro and con, as well as the side effects you may have had with IVIG

December 13, 2024
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A MGteam Member

I started IVIG (gamma guard) in September receiving 5 days in a row of load up and then every 3 weeks. The 5 in row was rough and I got sick with flu like symptoms and horrendous headache. Once I got past that I have been doing well with it and have had improvement and hope to have more improvement over time. It has helped me not have as severe flareups and not as often but I still have had a couple especially if I get over heated in any way. My typical symptoms are arm and leg weakness, always double vision, trouble speaking, swallowing and choking easily. So far none have been as severe as before I started the IVIG. I also take mestinon 3x a day. I joined an IVIG forum on fb run by a nurse named Beth who gives a lot of great tips and the ones that really helped me are drinking lots of water the day before,day of and day after infusion to stay hydrated as well as bringing a salty snack to help keep the hydration (I bring a big cup of ice water and salted pumpkin seeds and sunflower seeds to snack on during the 4 hours I’m there) also, she recommends keeping the speed of the infusion down and we did slow mine down to 150 the highest and I’ve had no reactions except some tiredness on the day of and a little the day after as well as slight headache which I take Tylenol right away and it keeps it away. Hope this helps you..Good luck 😀

December 16, 2024
A MGteam Member

Thanks so much!

December 16, 2024
A MGteam Member

KenCollier, this is encouraging because it sounds like we have similar symptoms. According to my insurance plan, it looks like it is covered. My neurologist said the first treatment in January would be a 4 dose super treatment then cutting it back to every 4 weeks. Thanks so much!

December 14, 2024
A MGteam Member

I'd been on pyridostigmine for a couple of years It helped lower my symptoms, but I was still suffering from fatigue, double vision, and some other symptoms. Last summer my neurologist added IVIG to the regimen, and it has helped a lot. (E.g. I haven't had any double vision since I've been on it.) It took a while to work out the right frequency, though. (Treatments every four weeks works best for me.) And you have to be able to give up 3 to 4 hours for each infusion. (It helps that I'm retired.) Also be absolutely sure that your insurance will pay for it, as it is very expensive. (I'm on Medicare which does pay for it.)

December 14, 2024
A MGteam Member

I did ivig off and on for years and I call it Wonder Juice! It was fantastic. However my insurance won’t pay it at this time and I still have another year for Medicare. Enjoy all the benefits! It’s very much worth the infusion time!

December 14, 2024

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