IVIG report
 

I would like to report that although my first IVIG treatment took two weeks to kick in at all, and then only lasted two weeks, my second one (6 months later) kicked in after four days. I've been strong for two weeks now. It's really nice--I don't know how long it's going to last, but it's good to be on my feet. I've got stuff to do, you know?

I don't know why this treatment worked so much faster. I hope it's a sign that the Imuran I've been taking for five months is doing something.

Abby

Glad you got a positive result. My strength has been dropping off, been thinking I may need another IVIG treatment because it has been about 3 months since the last one. However my vision has remained pretty good. I have been on Imuran for 9 months now. I still have a little trouble swallowing in the evenings.
Abby hope it lasts for you.
Mike

The goal of IVIG is to keep you at a constant strength (or as close as it can) each infusion will take less time to take affect, (hopefully) and will last longer...I think. This is what my neuro told me.

Stellatum
 

WHAT WONDERFUL NEWS! THAT IS FABULOUS! I REMEMBER MY FIRST IVIG TREATMENT......THE ENERGY WAS AWESOME!:D
I COULD FINALLY MOVE MY FACE AND COULD NOT STOP SMILING!:D
SO GLAD TO HEAR YOU HAD SUCH GREAT RESULTS.....SOUNDS LIKE YOU ARE ON THE ROAD TO REMISSION/RECOVERY!
BIG HUGS!
ERIN:hug:

ive heard that from mine as well and i believe it big time. my first treatment took 3 days to kick in after the 5 day treatment and i had 6 treatments after tht all two days that kicked in 2 days and are starting to last all the way until the next treatment comes up

Abby,

I am suppose to be starting on IVIP soon and I am very nervous can you tell me something about it? Thanks, Jan

Hi, Jan. I hope it helps you a lot. The nurse will put an IV in your arm, and hook it up to a tube attached to a small bag of clear fluid. I don't know if you've ever had an IV before. It's inserted with a needle, but then the needle is withdrawn, leaving a very narrow, flexible plastic tube in your arm. It doesn't hurt once it's in, and the fluid doesn't burn or anything. Then you just sit and wait for a few hours--have something to do! If you want to move around, you can, because the IV bag is on a pole on wheels. It's plugged in because it has an electronic monitor, but there's a battery back-up so you can unplug it.

Some people get headaches as a side-effect, so a lot of people pre-treat with tylenol and benadryl. If you tend to get headaches, they will also slow down the infusion for you. I have been headachy for the days following the treatment, but nothing ibuprofen can't handle. Otherwise, I haven't noticed any side effects. They say to be very well hydrated. Drink a lot of water before and during IVIG. This helps reduce side-effects, and if you're well hydrated, it's easier for the nurse to insert the IV.

Sometimes it takes a few days after the last infusion for the effects to really kick in. But IVIG is a very successful treatment that's literally a life-saver for many MG patients.

IVIG is made up of the antibodies taken from the plasma of thousands of blood donors. It's not clear exactly how it works on people like us with autoimmune diseases, but it somehow alters our bodies' immune systems so we get a break from the attack on our neuromuscular junctions.

Lots of people have more experience here than I do, so feel free to ask any questions. I hope it makes you dramatically stronger!

Abby

Liftyourhands good luck to you. It's really a pretty easy thing. Where I have mine done they have a snack room, tv, movies and sometimes I take a laptop because they have wireless. Let us know how it goes.
Mike

Hi Mike and Abby,

Thanks for responses I'm very nervous about all of this, may I ask another question, my symptoms started in my toes (numbness) progressed up that leg than started in other foot and leg then both arms, now I'm experiencing twitching all over and some slight muscle aches, I have done many blood tests all negative so far then spinal tap showed slight elevation CSF 50mg, according to my lab normal range I think is between 15-45. Based on this and my symptoms the DX CIDP. Doc wants to start me on IVIG ASAP. Thanks for any comments, Oh by the way I feel really awful! Thanks, Jan

I haven't had any of those symptoms but they use IVIG for a lot of different problems. Don't be too concerned about the procedure. I had no problems at all except for a couple of minor headaches.
Mike