Ivig anyone?
 

So today at my nuero appt., he offered me IVIG. I am currently on a lot of Mestinon, and 20 mg of Prednisone (which apparently I'm maxed out on, cause I got even weaker when I tried to taper higher). I still don't drive, and I have a significant amount of weakness while on my dose...and so much more weakness during the last half hour and first half hour of my next dose. The thing is, while I would love to feel normal again, and actually be able to go places and like take walks again...I am used to feeling this way now...and the idea of IVIG, makes me nervous. Any personal experiences with it, good or bad, would be appreciated.

Thank you,
Jessica

Hi Jessica,

I've only had good things happen with IVIG. The worst thing was a migrane after my last lot, but I managed that with my usual meds.
My first ever treatment I spent 5 days in hospital, the initial dose due to the fact that they had to give it so slowly took ages.
My last lot I was an inpatient for the day, no probs at all, the worst thing was going to the toilet attached to equipment.
I know alot of people here say to take, eep can't remember what beforehand, I know some knowlegeable people will be in to fill in my blanks. I don't take anything, but do drink lots the day before and take my own water to drink on the day.
It does give me a boost.
Kate

Hi Jessica,
I've only been diagnosed since September. But I started out withfive days of IVIG. Didn't feel really good after. But once my Mestinon dosage was increased to 60mg I felt much better. Had IVIG for three days in November. Felt really good after. I always have breathing problems. I go in for three more days of IVIG on Monday. They give me Benedryl and Tylenol before the IV to ward off any bad reactions. Sometimes I get a headache. But the IVIG for sure, makes me feel stronger.

Ellen

Jessica, I haven't had IVIG, so I can't help with that. Ask lots of questions, make them go slowly on the infusion (always) and tell them about any symptoms you are having before, during or after.

I hope it goes well and that you feel stronger.

Annie

Hey Jessica,

I haven't had IVIG, only plasmaphereis, but I can understand your concerns. I hope it works for you and you are able to do some of the things you aren't able to do now. I'll be keeping good thoughts.;)

Hugs,
Pat

Jessica,
I can remember when I was first diagnosed in November 2008. After doing a lot of research, I told my neuro that I did not want steroids or IVIG. He told me that I was really "tying his hands" in my treatment. Well two months later and I was on both steroids and IVIG. Breathing and swallowing were major issues at that point, so both helped me.
IVIG did wonderful things for me! I hope that it works well for you too. The only thing that I can think of is the infusion rate and amount. They calculate the amount based on your weight. The rate is a "protocol" that is generally followed.
Take care ~ Melanie.

With each treatment review did it help me or not
 

have already read and met prople who were put onto pred with no improvement omly problems.
everyone is different but the control of your treatment is for you to control do not forget that .did it help or did it not .
these drugs are body destroyers when they are not working.
:grouphug:

Hello Jessica,

I had IVIG and for me was the best thing. In my case it does work for few good months ...
I had it twice, once without knowing that I have MG (because it was administered to diminish the effects of a post partum hemorrhage) and once 8 months later, when I was diagnosed with MG.

I felt energised and I do hope you will feel the same. Best of luck , keep us posted

newmg