Allen, if IVIG works, I've heard it is like "magic". If it doesn't work (and mine didn't) -- I suffered all night long (I have migraines, too) waiting til morning to contact my neuro to see what I should do. He told me to go STRAIGHT to the ER -- for a CT scan -- and to get Demerol and Phenergan via IV. The ER physician knew NOTHING about MG (I was 1 1/2 hours away from my neuro) tried to give me Morphine, too -- AGAINST the orders of my neuro. Fortunately, the first tiny push of morphine made me NAUSEOUS -- a smart nurse STOPPED it immediately. I later learned that it could have killed me -- I am Bulbar -- prone to severe respiratory problems.

Long story SHORT -- if you are gonna have problems with IVIG -- you WANT to have them IN THE hospital WITH your NEURO nearby!!!!!!!!

I don't think that they will MAKE you stay IN the bed -- they will just want you IN the hospital where they can keep an eye on you. When I was getting IVIG in the infusion center, I was able to walk around and roll the IV pole with me -- to go the bathroom, etc. Five days is a LONG time to get IVIG -- they will probably only give you a drip for a couple of hours per day. SMART doc!!! The slower the better -- the less likely the chance of a headache.

Allan,
I have had IVIG treatments and the results are WONDERFUL! I hope that it works for you. The first time I had was during a crisis but the doctor said that it is normal for the first treatment to be done in hospital. They want to monitor you very closely to make sure that you don't have any adverse reactions.
We need the support of one another, so please post and let us know how you are doing. Take care ~ Melanie

Thanks, Melanie, for posting after me. My post seemed like such a "bummer".

Allen, MOST MGers really seem to benefit from IVIG and LOVE it. I'm QUITE jealous!!

I loved my infusion center and my infusion nurse -- was so looking forward to the monthly visits. I just knew that this was going to change my life.

Allen, I'm looking forward to hearing about YOUR wonderful results!!

after my neuro told me he feels Im going to be 100% relieved of my symptoms, I looked up IVIG again and read a little about it.
Seems if its given in the first year or year and a half when disease shows, works faster for patients.
Im very uptight anticipating having to go into a hospital voluntarily to let them pump my body with others people stuff, knowing full well I can have a ton of different reactions, suffer weakness, headaches, fevers, chills, and do it all for 5 days and get nothing out of it.

ofcourse, alot of my fears and problems with hospitals are related to my past experiences.
Humiliation and loss of dignity are things Ill never tolerate again.
shoulda seen a look on the young nurse when I took my hand and slammed the door closed after she told me to walk to the procedure room down the hall, past patients, family members, staff, (colonscopy) in a gown made for womans small, and IM a 2x sized man. My junk was hanging out from the bottom. She thought I was being picky, so I showed her when I stood up, and her response was noone is going to be looking. so I slammed the door closed as she decided to walk out of the room on my statement of loss of dignity,and I held that door and told her fine, you take off your shirt and bra and walk thru the hallway with me, this way most people will stare at your nakeness and not notice mine at all!
She came back into that room in 30 seconds with an appropiate garment for me to wander out in public. This is a problem I have with nurses and technicians who work with so many people they regard them as meat, or wallpaper.
If anyone reads about an irate patient that accidently threw a nurse or hospital staff through a wall, well, youll all know who it is.
Im going in with a good attitude, I will not let past experiences influence this one.
Again, Im sorry if things I say offends anyone, its not my intentions, I just really dont like any of this hospital and transfusion stuff. First time in my life, Im scared of something, not easy to admit.

Allen, I am really sorry to say that you are making me feel MUCH better. I had gotten to the point that I believed that ONLY women received "crappy" medical treatment. So glad that you have set the record straight!!

I'll keep my eyes open for you in the news -- just kidding .

The way it works with me -- if I WORRY about it -- it won't happen. So, based on my experience, you are bound to have a lovely, carefree, and PRODUCTIVE IVIG!! You'll probably feel like Superman after this is all over!!

Hey, thought I'd set a bit of my 2cents into this matter.
First, I have been getting IVIG fro the last 4 or 5 years now. I started out every two weeks and now have an infusion every Monday. Since my resp failure in Jan 09 I have been deemed "homebound" and so can get the IVIG at home now. I used to have to drive to the infusion center here in town and sit for hours while it infused.
Ivig is not the cure all for me, but it is a very helpful component in my treatment "medley".

I have had only ONE reaction from IVIG in all this time, my rate is 150 and has been for a very long time. Well I said to the nurse who has done my infusions forever, how's bout we bump it up to 200 and see how that goes?? Well, bad idea!! got the worst headache for two days!! LOL

This brings me to one of the very important keys to IVIG success/no negatives. RATE RATE RATE!! Like buying a house is location location location, IVIG is very rate dependent as to whether you'll have problems with it or not.

They need to start out at 25 for 30 mins, then up to 50 for 30 mins, the to 75 for the duration. If you feel anything out of the ordinary, have them back off on the rate!!

You will have to be vigilant with this. Most floor nurses have no clue what they are to do with the IVIG. If they have any experience it's usually with a single injection of IVIG post exposure for some diseases. Your doc should have a protocol for them. If he doesn't you need to put your foot down and get the above rates.

Next, remember location location location?? Now ya got that, so moving on to hydration hydration hydration. You need to drink and I mean drink till your eyeballs float. This helps to keep things "thinned down" as the IVIG is very viscous or thick. So you need to make good friends with a water bottle. Think in terms of liters not glasses of fluids.

I will usually drink near 1 gallon before during after a single infusion. So if you love any particular drink take it to club med with you to ensure you'll be able to drink enough.

Oh and not to be forgotten, MOST people premedicate with a benadryl and two tylenol. So ask the nurse about that. I can get a little itchy if I forget the benadryl. It really does help to have both.

SO remember: RATE HYDRATE PREMEDICATE! *just noted that rhymes!*
(ok so won't quit my day job for poetry writtiing)

I wish for you a very smooth admission/progression/treatment. And I pray that the IVIG is just the ticket for you!! Many people have done this successfully and done very very well.

Know I am praying for you!! Feel free to email if you have any questions/concerns/or just wanna talk with someone who's been there done that and doing well!!

Hugs
Deb

after spending a week reading about Ivig on the internet, whatever sources I found, Ive never been so uptight as I am right now, knowing they are calling me to come in tomorrow morning.
Ill report live from the scene if they let me.

Good luck, Allen. We're all pulling for you.

I've never had IVIG, only plasmapheresis which was just last month.

Hey Allen,

Good luck tomorrow! I'll be keeping good thoughts.

Hugs,
Pat

Angst.

I guess the people at the hospital dont get it.
I was told to sit and wait by the phone until they called me up today to come in.
I forfeited a days salary, not to mention I had to have my wife take off 2 hours this morning to handle something for me, since I knew the hospital would call my home and not my cell.
And at 2:30, they called, and I was told no bed available, maybe tomorrow.

My eyes are starting to get tired now, as is other parts of me, so Im hoping the hospital is happy knowing I lost a day of salary and sanity waiting for them to tell me I cant come in.
This crap never gets any better.
This all sucks. I dont like hospitals or anyone that works on the administrative end, and I pray the staff administering this soup is better at human relations than the admitting office. Yes, I understand its not their fault, but Ive paid my freekin dues, Ive given up part of a normal life, and this is just one more lousy nail.
Im sorry for the rant, hope you all are having a better day than usual. I wanted to update on my IVIG treatment.