I had my first day of home infusion therapy today.
Uneventful. Nice nurse, all supplies arrived yesterday by courier, a huge styrofoam crate.
I did receive a different brand this time. Gamunex.

Allen, I can't read your whole post, it's too much for my eyes and brain! I hope the infusion continues to make you feel better. Having it at home is much better. Stay hydrated!

Annie

Allen,

This struck a chord with me, When I went through my IVIg sessions I noticed cramping in my arm if they put the line in my hand, it wasn't so bad if they put it in my upper arm. I stayed quite stiff for a while and in the morning I have to work the stiffness out of my hands. I am 35 and never hand any symptoms like this before, so it might be related to the IVIg...

Im not sure, I see my gp and my neuro both this coming week, so Im going to discuss it. I hate bringing up new issues with my doctors. I dont like being ill.
IF anyone reads this, I do have one question tonight.
After my first ivig 10 weeks ago, I felt washed out for a few days I remember, just totally wiped.
Today, after my second home infusion, I felt ok, so I went outside a short while ago into my workshop, not to work, just to look around, but after 5 minutes I felt as if I was going to fall down, whats that about? I thought the fatigue and stuff dont hit you anymore after your initial Ivig.
Anyone else feel fatigued after their doses?

I try to stay positive......seems crap always happens.
I woke up at 5:45 in a miserable state.
Dont know why.
Nurse came this morning, at 8:15, my last day of home infusion,and ofcourse, the tubing didnt work, her tubing didnt work she brought with her, and there wasnt another one in the kit.
My wife is on the way driving the nurse home, since she has some tubing kits home and doesnt live all that far.
Its tuff to ignore this stuff when I count the minutes until I wont have a needle shoved in my arm and I can go back to my life.
I guess I shouldnt complain, the therapy works for me.

Allen, I don't take IVIG -- but, from what I've learned from members in another group -- your body gets used to one brand. Don't let them change brands on you again IF this one agrees with you. Gammunex is supposed to be the "Gold Standard", so stick with it if your body likes it.

Also, 10 weeks between treatments, from what I have been told, is TOO long. That is probably WHY you feel fatigued. It is like using pain meds after surgery. You want to take them BEFORE you start feeling pain. You want to take the NEXT dose of IVIG before the FIRST dose wears off. I'm thinking every SIX weeks -- but, you "might" be able to go EIGHT weeks.

Also, remember to DRINK, DRINK, DRINK!! This is a medical procedure -- and you need to treat it as such -- don't push too much!! You'll probably be "good to go" by Monday.

IM glad its over, always thinking of what could go wrong while they pump a litre of soup into my veins.
Im going to get them approx 6 weeks apart, or at least I think. Im not sure how the insurance company works.

I didnt get any real ill effects or tiredness this time. But I also havent felt the boost as I did the first time yet. My doctor feels I needed a fourth day, so now he wants me to record every thing in my daily routine, and the mestinon use, and other prescription meds, and my level of actitivity etc.....He was very stern about me keeping records, almost yelled at me to make sure I keep them accurate and enter daily.
He wants to get my treatment just right for me. Im scheduled for may 9th again, mothers day. If I dont feel better, or much better soon, Ill opt for the 4th day if the insurance company will approve it.

Allen, what was the FIRST brand of IVIG you received? I know you got Gamunex the second go-round. Maybe the first brand was better suited for your body.

hospital dose was gammaguard I believe.
Dont matter, it seems the ivig kicks in full force 10-14 days after dose, and its amazing how much better I feel. The past 6 days, zero mestinon. before that for a week, 1/4 of a tablet a day. Im feeling strong, no headaches, no eye problems, and Im beginning to have hope that this ivig can help me keep a close to normal life.
Im very thankful to the insurance company I have for paying for it.
Ive felt so good lately, I just about finished up my sons bedroom set.(my hobby is woodworking)
Im feeling very strong, Id compare it to rechargable batteries.
My batteries were blinking red, now they are fully charged on green and I am full of energy. The doctor scheduled my next ivig for second week of may, were trying to get a handle on how Ill need it.

Ir really is amazing how this just kicks in for me.
Like an ignition on a car. It just turns and kicks on.