I'm a newbie with this stuff and I've never had an IVIG before. The surgeon wants me to have one each of the 5 days prior to my surgery. My doc and hospital are 4 hours away from me. The surgeon said I could have it done closer to home. I took the prescription to my internal med doc Thursday and he said that he didn't know how to handle it. He basically said "We don't do alot of this sort of thing here at this hospital." This city has two major hospitals that perform open heart surgery's etc but you know MG is so rare they don't do much with that.
I told my IMdoc that I guess I could go back to my Neuro to have it done and he said he would check and see if they could do it.

This has made me very nervous I have read on here that some people do have major reactions during the IVIG treatment and I'm really afraid that these people might not know what to do in case something like that happens to me. So what would you do? Would you go back to the neuro to have this done? Or trust the local folks?

Thanks guys

Hey,

I'm kinda an overly cautious person, so I would probably want to go back to the neuro. to have it done...

When I had the treatment done, I did not have a reaction during it other than being extremely sleepy from the benedryl...

However, the day after my last treatment (and I only had two treatments), I developed a extremely bad headache...A week after the last treatment, I developed a very very mild rash on some of my fingers and the palms of my hands...I forgot what this rash is called, but it comes about from IViG sometimes...It went away after about a month...Didn't really cause any symptoms other than being noticeable to me...

I had IViG again this week (starting Monday)...I only took 1-benedryl this time for each treatment along with the two tylenols, I drank a lot of water the day before, the day of, the next day, and so on until today....I only developed a very mild headache on the last night of the treatment...I took two migraine tylenols and was fine...I'm continuing to drink a lot of water...Make sure that you do this...It's very important! The reason I took less benedryl this time is because I'm already on prednisone, and the benedryl caused me to pass out during the treatment which prevented me from drinking water...I was asleep for about 5-hours...I think that this is why i developed the headache...If you fall asleep, ask the nurse to wake you up often to drink water...

I wish you lots of luck with your treatment...You're having this done in prep. for thymectomy? Usually they do a plasma exchange prior to thymectomy...That's kinda unusual!

Anyway, good luck!

Hey hon! I would definitely go with the experts on this one!

IV IG is AMAZING stuff, but it IS strong so you'll want to go to somewhere with knowledge regarding it.

It will take about 2 hours to prepare the solution. Then you may want a PICC line to avoid being stuck several times. Trust me, it will come in handy!

The docs will probably pre med you with benadryl and tylenol and check your symptoms every 15 minutes until they reach your optimal rate. Some people can handle it fast - others, not so.

I LOVE IV IG! It is great! Just make sure to drink plenty of fluids before you go in and let the nurses know if you feel funny @ all!

I bet you are going to feel AMAZING after this!

Love,
Erin

I would go with the pros on this one. MG around me is also not well known and if I decide to do Plasma exchange I will have to go 2 hours away. I will not do IVIG because I react to harshly to meds. Listen to those that have it done, they know a lot good luck!

This is great information for me.

Nicknerd, The prescription that my surgeon wrote said "IV-IGG" 400 ky Gamma globilin X 5d. I really don't know what all this means so I am relying on the doctors on this. This may be plasma? possibly??? He wants me to do it 5 days before my surgery.

Erin, Nick and Joanne-I guess the benedryl is for allergic reactions? They haven't told me anything and I wouldn't have known about the tylenol or water if you guys had not told me.

This is scary.

IT means 400 mL for 5 days! Trust me, you are going to feel GREAT after it!

I get 500 mL for 5 days every month or so.....makes me feel like a new woman!

The PICC line was the scariest for me - but only b/c I am afraid of needles!

Hang in there!

Big hugs and prayers!
Erin

When my neuro recommended the IVIG for me, the distance was only a 60 mile drive...had to do it alone for 5 days by myself & it took 4 hrs + the hour wait while they prepared it....have to see the whites of your eyes to order it prepared, lol...so it took practically all day, & boy was I tired afterward....when I asked if it could be done close to home, he said no, at least the 1st time should be where they are used to doing it, so I drove....it did not do such great things for me as it does for Erin, but he is ordering a once a month "booster" for me soon...& I do feel somewhat better...& they did not address the tylenol & benadryl but I got it from this group & did it every day with no problems whatsoever.....JME... good luck....

Dottie

Go with the pros. I had a bad reaction and almost died (you won't have that - I have other health issues) but you really want to be with people that know what they are doing. It is worth the driving.

I would go with the people in the know as well. I had IVIG before my thymectomy. I have had IVIG twice and it went very smoothly. The results were amazing. The only thing is that I got a bad headache after the treatment but it was very shortlived. For your very first time I would make sure that you have all your bases covered. Take care ~ Melanie

Hey JCPA,

The docs. really don't know exactly how IViG works...They use it for people who have common immune deficiency disorder (hypogammagloglulineria sp.?) to provide immunoglobulin where there is none, and for others who have autoimmune diseases that are usually neurological...They think that it works for autoimmune diseases by flooding the immune system with 'normal' antibodies and thus neutralizing the abnormal ones.

Since they don't really know what the mechanism of action is, there are also side-effects that they're not aware of...For example, you can get hemolytic anemia from this procedure...Apparently, this is something that they just discovered...I know that after my first treatment, I developed a bit of anemia...Also, it can cause meningitis...this is where the water comes in...The water helps to bind with the extra fluids (apparently...this is how my nurse explained it to me), and allow you to pass it...You must drink lots of water up to a month after the procedure (I read this somewhere...The headache can be brutal, so I'd heed it).

You can get infections from this procedure, as I'm sure you're aware...The risk is minimal, but it's still something that people should keep in mind...Because you're having surgery, this or plasma exchange is a necessary procedure for you in order to make sure that you are at your strongest, so you don't have much of a choice...But the plasma exchange seems to present a lower risk of passing on blood-borne viruses, prolly 'cause only 5% of it is human...I also found that the effects of plasma exchange are very rapid...IViG seems to simply stabilize wherever I am at the time of getting the procedure done...But everyone's different...

I definately hope that things go very well for you, and that you're feeling as great as Erin does after it!

NIcky