Well, today was my first IVIG infusion. Because of the helpful advice on this forum from fellow MG’ers, I prepared by hydrating and just relaxing. I did very well and experienced no side effects. Tomorrow is a repeat, so continuing to hydrate and rest. Thank you all for advice and encouragement. I don’t know if two infusions will give me any MG symptom relief, but it’s a start. We’ll see what happens from here.

Barbi-girl

When I had my first IVIG, I felt great relief after 2 days. I woke up the 3rd morning and my first realization was that I could breathe freely, I didn't have double vision and I felt great! It was wonderful. Hope the same for you!

I'm glad things went well! Did Kaminski schedule you for every week, two weeks, or monthly? If you begin to feel great, be cautious of overdoing. With some people, IVIG only lasts for two weeks. The effect varies.

At this point, anything good is helpful! You sounded very close to a crisis.

Annie

Annie... I’m still waiting for Kaminski to issue his consult report to my local Neurologists and other specialists. This report will contain his treatment plan suggestions, so at this time, I don’t know the answer. He told me at my office visit he wants me to have 4-5 IVIG treatments in a row for 6 months. I didn’t ask how frequent. Today and tomorrow’s infusion were scheduled by the local Neuro before I had my Kaminski consult. Because of my exacerbating symptoms, I wanted to go ahead with the infusions as scheduled and not waste anymore time suffering with MG debilitation. I have no idea if receiving only 2 infusions will have any effect but it it was worth a try.

Day two of the infusion went well, or so I thought. I finished up around 1:00pm and continued to drink plenty of water through the evening. In the middle of the night, I had uncontrollable shaking and was very cold. I had a massive headache and could not warm up. My husband added another blanket and gave me Tylenol. My temperature was 99.7 which surprised me because I thought for sure it would be below normal. I’ve never had a headache like this in my life. Even my neck hurt. By morning, I was contemplating going to the ER as my voice became slurred, had double vision, couldn’t open my mouth and my temperature had risen to 100. My husband found a website which categorized IVIG side effect symptoms according to severity and it stated a temperature below 101 is considered a mild side effect. I tried ibuprofen to help the headache and it helped over many hours. I stayed in bed the entire day, sleeping on and off. By evening, I could finally shower and get a proper meal in me. Is this normal? I’m not sure I want to continue with a treatments whose side effects are worse than the disease. Please share your experiences with IVIG side effects.

Sorry you went through that. Sadly, it is normal, and usually happens when the infusion is run too fast. Definitely report the incident, and you will have to be very careful from now on to make sure the rate of infusion goes very slowly. That is easier said than done at times, depending on your infusion nurse.

I did IVIG for about 14 years and then sub-q IG for another 2 or so. The infusion had to go so slowly to avoid the side effects and even when I thought things were perfect, I would sometimes have difficulty. For me, the IG never brought miraculous improvements, either, but I was glad to have the protective qualities on board to prevent infections from colds, flu, etc.

Hope you feel better soon.

Glad that your IVIG sessions are getting smoother. I've had monthly infusions with few side effects but the chills in the evening following seem to be standard. The regimen is helping enormously however, along with mycophenolate.

What is the typical timeframe, in terms of days, before feeling positive effects of 2 days of IVIG infusions? I just about given up when ,today, I felt stronger and could walk unaided! That is 6 days after the 2nd infusion.

Still feeling stronger at day 8 following 2nd IVIG! How long will it last? My Neuro has stated I will not be given any further infusions because I did not get an immediate response. Looking for a new Neuro but want the truth from real patients on lasting effects.

Glad you are getting some relief and even more glad you are finding a new doctor. What a jerk! Sometimes it takes time to see what it can do, especially on the first round.

Your effects will likely last only weeks. That's the bad thing about IVIG. It has to be given frequently and since it's so expensive, insurance companies are hesitant to allow it except when in a crisis situation.

Good luck!