I've had a lot of IVIG, which was used to keep me going for a long time. IVIG can be used long-range weekly, as a main therapy, or IVIG may be used short-term to address a particular situation.
It is important - during the first infusion at least - for the drip-rate to be done slowly. Infusion-centers are very good at this, and monitor for any personal side-effects. Sometimes, an infusion of Benedryl is used first (sometimes just the pills are used). (Infusion is more direct.)
Keep us posted! (Do you guys go to a Neurology practice, where there are a significant number of MG patients?)

I now see your other posts.
It sounds like you have a good neurologist.

Thank you. He is take Benedryl and Tylenol before each treatment - Monday, Tuesday, Wednesday, Friday, Monday and then every two weeks until his eye issues resolve or thymectomy.

Hi Rankin, i just had my IVIG for the first time last week. Biggest issue for me was Boredum. I am very much like a teenage boy in the attention span department ha ha. Sitting was tough for me with someone "somewhat" overseeing me. The nurse was right there the whole time and i did it at home and she was great it was just boring. They will tell you to drink and yes, he needs to drink. Personally, I HATE water and no matter who tells me and how much its good for me i strugle with it... if he has the same issue, then flavored water, from CVS of Walmart was my saving grace.. 88cents for a big bottle.. hubby bought me a ton of them and thats what i drank. I did get a headache one day it is not a normal headache, its a BAD ONE.. needless to say ive learned my lesson to drink more.. that was the culprit. I was able to have only 2 IV's over the 5 day treatment as i kept it in my arm and wore a long sleeve tee shirt, the weather wont allow that now but if he is hanging at home then maybe it can. It seems to have made a positive effect for me with my breathing which makes me overall feel a whole lot better!! I did a post a before i did it about how much i hate the thought of doing it and frankly I still do.. but realy because it is boring... and messes up my work schedule and my family schedule and lets face it I dont want to be a sick person doing these kinds of things.

My guess is... buy him an IPAD.. an itunes gift card adn whatever else you can find to make him as happy as can be for the hours he will be infusing.. then... you will see...it should help his symptoms.

good luck!

M

Hi Rankin - I started with three days of IVIg and that was in April. I now have one infusion every three weeks, and it keeps me going along with mega doses of Mestinon. The benedryl will make him a little sleepy.
Maureen is correct, the boredom will drive you insane, I bring my iPad and anything else that will help with the passing of time.
Also, the fluids are absolutely essential. My first time, I had flu like symptoms after, chills, fever that sort of stuff but was fine the next day. I find the fluids take care of that. For me the drink of choice is a couple of bottles of Vitamin Water, oh I also find snacking on protein helps, I don't know why but a protein bar mid morning and another if necessary just after lunch if you are still there really helps.
If he is taking mestinon remember to bring it with you.

Good luck.
Richard

Hi I'm a new member who has Myasthenia Gravis. I just had IVIG. I was premedicated with bendaryl Tylenol and predisone for 5 days every other month. On day 1,2 and 4 I'm taking 40 mg of predisone and on day 3 and 5 I'm taking 60mg. All of this is because I was getting aseptic mengititis the bad headaches ,etc.

I have been on IVIG for almost a year. I have no side effect.. well like someone said Boredom. Depending on how much he is getting it will take from 3 -5 hours. My BD drops a little. But, I am telling you, it works great. I get infusion every 2 weeks. I get 40?mg..grams? not sure, 2 bottles. I was getting 60 every 3 weeks. 40 every 2 works best.
I don't need Benadryl. I have no reaction at all!
Good luck to your son.
Dee

I forgot to mention, my infusion is done in Infusion center of Swedish Hospital in Seattle. Very comfortable room of my own. TV, WiFi, can order food from hospital delivered to room.
Dee

So when he has to drink a lot of water, is it prior to the IVIG or during? Thanks for all your replies. You are all so helpful and I greatly appreciate it.

Drink the water before during and after... trust me the headache, although for me was short lived... was pretty brutal.. I wanted to remove my HEAD.... totally avoidable..

Also, when i wrote my last post i hadnt seen too much improvement.. now.. 7 days out.. yes.. i feel better.. much better... lowering my mestonin dose etc.. .80% normal i would say and lets just say that hasnt been the case in a long time.. so its worth it to try.. just boring as heck!!!

I have always gotten a terrible headache on my third day. I take ibuprofen ,benedryl ,and drink water like crazy. Also have a slow drip rate. The dr. added pre and post iv hydration . Still got the headache. The last time I starting taking tramadol at the first sign of a headache and continues every 6 hours thru day three. No Headache!.
I usually feel tired and a little achy for a few days. Like Maureen, it really kicks in about a week later.

Good luck!

Judith

My IVIG 4 day home infusion worked well for about 6-8 weeks. May I ask, how do you all pay for this? My UHC AARP Medicare Advantage plan paid once for IVIG as a drug. The treatment was $35 K, costing me about 10%, driving me thru the donut hole.

The links at the bottom of the main MG page will lead you to comments from many IVIG users, placed by the unsung heroes who created this site. For me, the first 5 day treatment, after a week, gave marked improvement that lasted 2 days. The improvement span doubled each time. One year later, the improvement span lasts about 10 weeks. Wishing your son all the best, so sorry he has come down with this malady. Please keep us updated.

Five treatments gave marked improvement for only two days? That's disappointing.