IVIG infusion today

[meirish]

Jut out of curiosity I am wondering how many people we have on this forum who get IVIG for some reason or another. Or even some of the other medications infused for autoimmune issues. I started mine in 2006 and usually had 1 infusion a month until the last 1 1/2 years when I had to go to infusion every 6 weeks instead of every 4 weeks.

Today I had what I believe was my 180th infusion. I got 80 grams much of the time which ran about 6 hours or so and now down to 60 grams due to decreased kidney function which only takes about 4 hours or so. I hardly get settled in and time to take my nap and it is time to leave. Enjoy visiting with the great nurses and staff at my infusion center and they are like part of my family after all these years. Thanks. meirish

[Carolina]

Hi, Irish.

I have Primary Immune Deficiency (critically low IgM and IgG).

I have an infusion of 35 grams of IgG every four weeks.  I've had an infusion of IgG every four weeks since 2013.  The nurse now comes to my house, so I don't even have to travel.

Before I started infusions of IgG I was sick about 3 weeks out of 6.  Recovered just enough to catch the next thing going.

AFTER I started the infusions of IgG I stopped being sick!  Except for my UTI curse (I think related to my high dose of methylprednisolone) I didn't catch anything going around at all.

Unfortunately, while my own Immune System can't protect me without help, it also attacks my organs and systems.  I don't have autoantibodies (for an autoimmune attack) instead my Immune System attacks me with Cytokines.

So I'm not sick all the time, but I have very complex and severe damage to my body, and I'm completely disabled.

My Neurologist recently recommended I use a Power Chair instead of my walker, because I'm so unstable, even wearing leg braces on both legs.  And both my knees are 'bone on bone' so very painful and collapse from time to time!

I'm waiting on Medicare approval and then I'll get the chair.

Regards, Elaine

[meirish]

I bet you will enjoy the new chair when you get it. So many people where I live have them and get around so good. Hope you are having a fairly good winter. Take care. meirish

[Carolina]

Hi Irish,  yes I'm really looking forward to the chair.  The PT people here will train me to use it safely.

I live in North Carolina, and winters are always easy.  Usually only one snow fall of about 1-2 inches each year.  People plant pansies outdoors for the winter.

Elaine

[SjoDry]

I know this thread is a bit older, but I have CVID and give myself a weekly Sub-Q infusion of IVIG meds.

Take care.
SjoDry

[meirish]

Just saw this post now. Yes, there are a lot of people now giving their own IVIG at home. The infusion center where I go teaches people how to do this after they get stabilized on their IVIG. I asked about this years ago but my dosage was too high. I don't know where the dividing line is on the dosage schedule but I would think every drug is different. So great to be able to do it yourself and I bet it makes the insurance companies happy to have to pay less. Take care and good luck. meirish