Keep hydrated. Sitting upright works for me, it seems lying down is when I get the headaches. Take something to keep you occupied instead of watching the iv drip, it gets boring. Sometimes, I feel alright after the treatment, other times a little groggy and even nauseous for a day or so. Never had any serious problems with it. It makes a huge difference with mg. You'll do just fine.

Thank you .. I hate the needle thing and really not looking forward to going. LOL. I hope it helps with my stamina .. I can deal with the double vision droopy eye and the now and again drooling. LOL. but the walk to the mail box and huff and puffing and legs feel like I ran a mile is what gets to me.

Welcome to the group, glad you found us. Lots of good info and support here.

You've already got past the first hurdle for most of us ; getting a diagnosis. Some of us go years w/o the medical world being able to determine what our illness is.

Now, it sounds like you have a physician who is willing to treat your disease, which is a good thing also.

I predict you'll be feeling a whole lot better sooner than you think, and your life will stabilize.

I have not had IVIG yet (just Mestinon), so I can't tell you much there. If you search this site for "IVIG", I know that you'll get lots of hits, and will be able to answer a lot of your own questions.

Take Care! Chris.

I just got lucky I guess. they 1st thought I had a mini stroke. so I was sent to have a MRI on my head. when it showed nothing the doctor sent me to a ON doctor. were he took a bunch of blood and tested and came up with this. Than a CT scan to see if I had a tumor .. and that showed nothing. so thats good. Only bummer is I have not a clue how long I will have this double vision and lack of stamina . doctor just keeps saying it should get better in a few weeks. LOL. its been a few months and still the same. what sucks the most is work. been out of work for almost a year due to economy and just when we get a job I have this. were I cant do my job. I build houses and cant even read my tape with the blurry vision and seeing 2 of them. so now the bills are piling up. SUCKS. What it is is what it is. Thanks all sharing and this group . learning more here than I have any place elase.

Keep yourself well hydrated, the night before and that morning. Many people continue hydrating after the IV has started, but that's too much liquid for me! Hydration plumps up your blood vessels, and makes the whole process easier, in general.
Ask your IV Nurse about pretreatment with Benadryl and Tylenol. That sounds kinda simple, but it can help. It's an individual thing. Sometimes the Benadryl is by IV, sometimes by pill. (Don't worry about hydrating, and using the bathroom, the pump can gently wheel around with you. I'm clumsy as they come, and even I can do it.)
The typical treatment starts with a slow drip, often 30 to 50ml.
If you tolerate IVIG well, and many people do, the drip rate might be increased at regular intervals.
Don't be shy, with the IV Nurse. If you have questions, or notice itchy skin, or something else - don't hesitate to call.
The IV Nurses are experts, don't worry about the IV itself. I will often get up carefully, and walk around a little bit, just don't ram around.
The pumps can sometimes send out alarms, and the IV Nurse comes to check on things. The pumps are manufactured to stop, for many, very minor reasons, all safeguards. Over many years of IV Therapy, I have never heard of a malfunctioning pump.

The amount of time involved, varies from person to person, depends on the amount given. First time around, it may take 6 hrs, maybe more. The first few times are slower, in general.
Bring a new or favorite book or magazines. There may be plenty of reading material available. My outpatient clinic offers TV as well. Accept a pair of headphones, even if you only use it for a half hour.

IVIG cost. You may want to very seriously consider getting supplemental coverage to any BC/BS or other insurance. I have a BC/BS supplemental policy to my Medicare B. Together, all costs are now covered.
All my IV Therapy was at a hospital outpatient facility, which charges $8900 per treatment. (Some people can receive treatment at home, which is considerably cheaper.). Medicare B covered a lot of the bill, but each treatment cost me $900 out of pocket, until I got the supplemental insurance.
Other people here, can tell you about IVIG and private insurance. Some policy coverage is very good, and some is not.

I hope everything goes well for you! IVIG is so routine for many of us, that many of the ladies jokingly call it a spa day!

At first, I was not a big fan of needles either, but now an old pro.
At the large and busy outpatient IV Therapy, I go to?
The IV Nurses ask everyone if they would like some numbing agent, before the IV needle. Novocain, I guess. Early in my outpatient treatment, I tried it once.
My IV Nurses do such a good job, the Novocain just isn't needed.
But see if that kind of thing is offered, if you think it might help.
The IV needle is not big anyway, don't worry, you'll be just fine.

One reason to take plenty of fluids is that the Ivig is viscous (thick), so it, in essence, thickens your blood, causing the headaches.
As far as the needle sticks, you can get your doctor to prescribe Emla cream (prilocaine/benzocaine) to numb the area before your treatment. I use it for plasmapheresis, because the needles for it are quite large.
Hope all goes well for you!

Make sure they run it *slowly.* Very, very, slowly. The first (and last!) time I got IVIG, they told me they were going slowly, but they weren't. I ended up with meningitis (file that experience under "things I wouldn't wish on my worst enemy"), and that put my in a myasthenic crisis and I landed in the ICU. I'm very wary of IVIG now and I don't think I'll ever do it again if I can avoid it, though it was 100% the nurse's fault for putting it in me way too fast.

Many people also use their iPhone or iPad or other device, while receiving IVIG. Helps to pass the time.

During my last IVIG, I slept most of the time.

Slow drip - (will catch any side effect you may have before you get too much) I ask the nurse every time about the drip rate. It's too serious to assume they know that it should be started slow.

Benedryl eases side effects

Hydration - two days before and two days after

I also take Tylenol an hour before my appointment ; I haven't had any problems. IVIG has given me my life back. Good luck!

Hey CMFINC - I had the same experience -- spent the better part of a day and evening thinking I had a stroke or a brain tumor -- having MG seems very easy after that....

Just keep drinking water during the IVIG - plan on going to the bathroom a lot!

I am sorry you have so much stress in your life right now -- MG loves stress! But take it easy-- nothing is more important than your health. Good luck with the IVIG!~

~Joe

Hi.. I'm also in this boat soon.. I'm working on getting the insurance approval.. What is a slow rate to check for on the IV ?

whales, I found that I could only tolerate it if they ran it over about 8 hours. (Putting in a full workday with the drip!) I wish I could remember what that rate was, but I was really out of it from the meningitis/pain medication at that point.

Thanks all. well I made it. they did the speed in a 4 step set up. started at 30ml/ph for like 30 mins than went to 90ml than went to 150ml than finished up at 300ml the 1st day.. all went well. 2ed day they bumped it up. They said my balance intake goal is 770ml/ph . They started at 30ml than 90ml than 350ml than last steep was 550ml. at like 3-4 mins to the end of stage 3 the 350ml/ph I started feeling some pain were the IV went in. They stopped the infusion cheeked veins had some swelling and a slight red streak up my vein. they cheeked the IV point said they were not getting any blood back flow from IV point. so they wanted to start a new IV saying the vein was for say used up.. AND BEING THE HATE NEEDLES BABY IM .. I started to really stress out and get upset. SO they said lets try to flush it again a few times and restart IVIG at the 350ml/ph till finish and just not do the 550ml/ph and see if it starts to hurt again.. HMMMM new IVIG point or some pain?? LOL.. POOF when they asked I was fine pain was gone.. LMAO.. New IVIG point my ass. I will say 1 thing. the pharmacies who made up my immune globulin was a ton of help and info and were to go to see what the meds do how they work and why. She gave me web sites to go to and printed out stuff for me as well as gave me a magazine called IG Living you can get FREE delivered to your home every other month. the magazine is about immune globulin community. I have not cheeked it out yet. Ill post a few links I got. im sure there posted here some place but ill post them anyways. One of the sites is called up to date.. it shows drug info and treatments for MG up to date.. and the other one is Myasthenia Gravis Foundation of America..This place has info on doctors meds who what where and so on. how to deal with Insurance.. Social Security .. and the list keeps going. bummer is theres a ton of info there but hard to find it all. just have to go page by page. want a med bracelet its there. anything and everything. LOL.

Forgot,, My 1st IVIG on Friday took like 4 and a half hours .. the 2ed infusion on Saturday took 3 and a half hours. No probs other than Saturday night and even today a slight headache and my vision seemed to get more blurry but not sure if it was the infusion or not.