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-   -   Ivig (https://www.neurotalk.org/myasthenia-gravis/95200-ivig.html)

korbi_doc 07-26-2009 09:54 AM

Ivig
 
I apologize if this has been gone over before, but the only thing I seem to remember is lotsa water...I'm scheduled for IVIG starting Aug 3rd, what should I expect?..what can I have before & during treatment? Breakfast ok?? It starts real early, lasts over 4 hrs (?) & I'm gonna be real tired driving over an hr up & back for 5 days..just hope it helps, not sure it'll affect the peripheral neuropathy that's causing all my pain...TIA....

Dottie

Joanmarie63 07-26-2009 10:21 AM

I never had IVIG so I just don't know but from what I have read I thought they admitted you to the hospital for the treatments. If you can't be admitted does your ins. cover home health? I have a nurse that comes to my home to give me weekly IV infusions {for something else} I am sure one of the IVIG people here will be able to help you. As Erin calls it Go-Go juice :D Good luck and keep us informed as to how you are doing.

cricket001 07-26-2009 01:32 PM

LOTS of water...and make sure that you are pre-medicated with tylenol and benadryl ...and IV steriods....I have to have a little xanax too...because I get a little anxious before each infusion...

I have to have my IVIG infused over 12-14 hours because I am so sensitive to it.

Also, I always get severe headaches approx 2 days after the infusions...

BUT, all of this is worth the energy that this stuff gives me! I feel like my old self after a week...and it lasts for a good 3-5 weeks!!!:yahoo:

Pat 110 07-26-2009 04:38 PM

Hey Dottie,

As you know I don't have them, but I thought it took longer. Seems to me the slower they run it the less chance of side effects, but others can fill you in on the details. Is there any chance someone who drives can go with you just in case you don't feel up to it? I am sure you are going to feel much better when it starts working. It helps so many here feel so much stronger and better. I'll be keeping good thoughts. Take care.;)

Hugs,
Pat

neutro 07-26-2009 05:15 PM

Hi Dottie,
At least 1.5 liter of water per day...
I had mine infused at a rate of 200 cc over 4 hours, the normal cure is fifteen 200 cc bottles. At that rate, 3 bottles a day, you're in for 5 days..After the first couple of bottles, if everything is ok, they can increase the infusion rate to 1.5 hour per bottle.
I never head any headache and I never took any medication against it, but iVIg didn't work for me, I had two without any effect...
Maurice.

TxSimon 07-26-2009 06:12 PM

Quote:

Originally Posted by korbi_doc (Post 542629)
I apologize if this has been gone over before, but the only thing I seem to remember is lotsa water...I'm scheduled for IVIG starting Aug 3rd, what should I expect?..what can I have before & during treatment? Breakfast ok?? It starts real early, lasts over 4 hrs (?) & I'm gonna be real tired driving over an hr up & back for 5 days..just hope it helps, not sure it'll affect the peripheral neuropathy that's causing all my pain...TIA....

Dottie

Dottie,
Others are right about the water and being hydrated. Also the tylenol and benadryl are important pre-meds. I have had severe headaches, so have to not let one start. If you feel one coming on during the IVIG, let the nurse know so she can medicate you to stop it immediately. You don't want one to even start. Also, so people have flu like symptoms after the IVIG. I didn't have that but have spoken to others who have it done with me that have it every time. I also have eye twitching severe after the IVIG treatments. Just wanted to share, but each individual is different, as you will see, but at least you can be aware of what some of us have gone thru. Hope all goes well with your. You will find out that the "Go Juice" will give you renewed strength. I was amazed what it did for me. Best wishes and let us know how it turns out for you.
Hugs to You,
Simon

erinhermes 07-27-2009 04:14 AM

Hi Dottie!
 

Hi Dottie! Lot of fluids, premed - always - and it will go smoothly! I love my IV IG! I was getting it once a month for 5 days and loved it, but now my dr want me to switch to the plasma exchange b/c I seem to crash so hard now....hate that! They will be checking your blood pressure and temp every 15 min or so and bumping up the rate = I as up tp over 400 mL @ one point, but my nuero had them slow it down to prevent kidney da,age - so you will be there a while. Also, I don;t know if your hospital does this, but mine makes sure I'm actually THERE b/4 they mix the solution - one idiot decided to not come in and ruined it for all of us - so expect an additional 2 hr wait if they do.

I always pack my hosp bag with magazines, books, crossword puzzles and my computer. I also bring my home pillow and down comforter. The nurses store my stuff there.

The driving back and forth may be a problem though. Is there anyone who can do it for you?

IV IG is GREAT stuff! I bet you love it!

You'll probably feel like superwoman after it!

Hugs!
Erin:D


Quote:

Originally Posted by korbi_doc (Post 542629)
I apologize if this has been gone over before, but the only thing I seem to remember is lotsa water...I'm scheduled for IVIG starting Aug 3rd, what should I expect?..what can I have before & during treatment? Breakfast ok?? It starts real early, lasts over 4 hrs (?) & I'm gonna be real tired driving over an hr up & back for 5 days..just hope it helps, not sure it'll affect the peripheral neuropathy that's causing all my pain...TIA....

Dottie


korbi_doc 08-07-2009 07:12 PM

Ok it's done, sure hope it helps!!
 
Well everyone, thanks for all your input...you were all so right...did use benadryl & tylenol before each start: no headaches or reactions thanks to y'all....after 5 days of the hour & half drive & an hr wait for the med to be prepared,(yes, Erin, they have to see the whites of your eyes, lol)..then a four hr "drip" followed by 20 mins flush, boy, was I extremely tired, or should I say beat up...(Cricket, can't imagine 12 hrs of this) ..'course had to feed horses am & pm & prepare the dogs to be in for the day (inside dogs)....so glad you all prepared me for this, since no one seems to think it's a necessity...just show up...lol...tonite I'm resting a bit..have been very early to bed all week cuz I was just wasted, tonite not so bad....the drive, tho long, was not bad & the hospital nursing staff was great...
Gosh Maurice, sure do hope it helps after all this, sorry it didn't work for you...
Now for my next trick, have to fly to NJ on Sun to be with my daughter who will have a cardiac ablation surgery next wed....whoa!!

Dottie ;)

TxSimon 08-07-2009 10:39 PM

Dottie,
Glad to hear things went ok. Take it easy on your trip and don't overdo. Let us know how you are when you get a chance, once you get back.
Best Wishes and Hugs,
Simon

Pat 110 08-08-2009 10:16 AM

Hey Dottie,

I'm so happy it went so well for you! I hope you start feeling better real soon. Have a safe trip to NJ and I hope your daughter does well. Rest & take care.;)

Hugs,
Pat


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