Hi. I hv been getting IVIG for about 2yrs now. It has made a huge improvement in my MG. I hv done it three different ways. I've done at home and at the infusion center. I prefer to get them at home. ;but either way the treatment for the mist part us the same )

The nurse will that an assaimemt of how you are doing, and that you vitals to make sure you are good to go. She will start the IV.

Pre-Meds. There are a variety of pre-meds they may hv you take. Benadryl is pretty standard. When I did it at home I took it oral (it would knock me out for over half the day and I would feel froggy the rest of the day ) At the center I got IV Benadryl and I slept for like 1-2 hrs the was fine the rest of the day. Make sure you talk to you Nero if you hv headache easy as they may give you other pre-meds

****infusion rate ***** something that is super important is the rate of your infusion. Before they start scan your body in how you feel. As you start you infusion ANY changes in how you feel tell your nurse. They need to slow down your infusion rate as soon as you start not to feel well. (Aka headack heart pounding). Once you get to the rate that works for you write it down so you know it fit the next ines.

In the start of the infusion the will start really slow and ramp it up. They will take your vitals every 15 min for the first 2hrs then it's every hrs. The communication between you and your nurse you will get to your rare. Your doc will hv a prescribed rate but you may not make it that high. I could only handle 300. (That is pretty slow). How long it will take just varies.
Sometimes it wipes me out sometimes not. It depends I think how good I was coming into it. For me it took 2-3 days for me to feel normal

***** hydration ******** SUPER important. It is super important to be very hydrated 2 days before and a couple days after. And a must the day of. The IVIG is thick and if you are dehydrated then you are setting yourself up for problems. I drink like 70-90 oz of water the days around my infusions. I know that is a ton but it really contracts the headaches. (For me)

I hv also done it sub-q at home twice a week. This for me was the best way. I give the infusions to myself twice a week. It takes about 2hrs each time. It's nit widely available yet from what I gather but if you can find it I highly recommend it

Good luck. Keep us posted.

Hope it works out well for you. I did IVIG for four years until my MG kept progressing. I am on plasmapharesis now. The effect was pretty immediate for me even though I felt kind of drained for the rest of the day when I got the infusion. But the next morning I felt great. I have heard that it has helped many to be able to go into remission, and hope that it does for you. My situation of MG progressing severely is not typical so I would expect great things from IVIG for you. God bless.

Hi Ladyredbird

I started IVIG infusions last March and have received 9 months worth as of this time. My neurologist is at USF in Tampa Florida and she insisted that my first infusion be performed in a hospital. That went fine and then the rest of my infusions have been performed at a local cancer clinic. I received 145 grams over a consecutive 3 day period each month. She also started me on Imuran at the same time which I am told takes 6 months to take effect. I personally have done well on the IVIG but its super expensive. It sometimes seems to take a day or two after the infusions to feel better though.

I also personally had problems arise during the infusion time frame and the neuro states that IVIG infusion may be one of the causes of these. I ended up in the hospital for 14 days in August with severe blood clots in the right leg, heart and right lung. It was discovered at that time that I also have a condition named Factor 5 Leiden which is a gene issue that can lead to clotting. The IVIG combined with this gene factor can easily cause issues. I am now on a blood thinner named Zarelto which seems to be controlling the problem so far.

I just had an appointment with the Neuro last week. I have been doing well enough that she is dropping me down to 110 grams each month which should easily be administered over a two day period instead of three. If I still do well after three months on the new amount, she plans on dropping me to 55 grams a month as a maintenance dose. The Imuran should be doing its thing now and hopefully I can still do well on the lower amount of IVIG.. I am also on Mestinon and Prednisone. The Prednisone has already been dropped from 40 to 10 MG a day with success.

As mentioned in an earlier reply, the injection rate is important. I was able to tolerate a 50 gram a day average in just under 3 hours. I would get slight headaches if it was faster than that. Good luck with the infusions. They can be a blessing if they work for your case. Everyone is different and some people see no benefit from the infusions.
Let us know how you do.
Steelplayer