Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Migraines from IVIG

barb4serenity
barb4serenity
I know this has been discussed here before. I need the latest info. I get migraines from IVIG. I am starting a new round of IVIG which will be 1/2 the dose every other week. Last weekend there was an error with the Orders from the nurse at the neuro office. I was Ordered a full dose. I chose to go ahead with the treatments and took tylenol before and throughout the treatments. Didn't keep the migraine away. I was out of work all week because I feel so badly. 3 of the 5 days without pay since I have run out of sick time. I am in the process of making sure this doesn't happen again. I HOPE that the 1/2 dose with prep of IV solumedrol, benedryl and post IV fluids will keep the migraines away. If not......any ideas of what can be done to avoid getting migraines??? Thank you for all of your support!! Barb.
judithwilson
judithwilson
I do best with a slow drip rate( around 90 ) lots of water , before and after, and Benadryl thru out the next day. For some reason, or it's coincidence, I have fewer headaches if I sit up, as opposed to lying down flat. I was recently in the hospital ( mainly because Blue Cross decided that they would not cover my scheduled home infusion, but that's another story) They ran the iv at a high rate ( I think 180) and I was lying down. I had the worst headache for 4 days. I seem to do so much better at home with the visiting nurses. I have 7 weeks to have my dr. convince them that ivig is approved for mg

Good luck! Those headaches are the worst!
joefnh
joefnh
Interesting this topic has come up. I just finished another 5 day IVIG treatment this afternoon. For some reason my neuro does not believe in anything but the full dose 2grams / kg which I get about every 10 to 11 weeks. That equates to 11 of the 200ml bottles of Gammagard.

I have had the worse headache all week and have had to take oxycodone for it. They do pre medicate with 325mg of tylenol and 25mg off IV Benadryl. I do hydrate quite a bit before during and after and the rate they run at is 197ml/hour. I did try 130/hr and it did not make any difference.

The good part is that by mid next week I will feel great.

Do any of you feel wiped out during the week of IVIG?

Joe
TBreak
TBreak
I increase the amount of water I drink 3 days before. Nothing but water to drink. I get 600 mgs of Ibuprofin and a benedryl just prior to the IVIg each day. 8 bottles of Gamunex (4 a day). I got a slight headache last time, but it wasn't bad enough to take medication for.
Bamboolilly
Bamboolilly
My max rate is 120. I drink 3-4 bottles of water every day. The nurse said it helps to push the ivig thru because it is so thick. I get 25 grams every three weeks (low dose ) ..
Be well,
joefnh
joefnh
This week I drank about 7 water bottles a day, I was floating!! LOL

The dosage I get is 220 grams given over 5 days. This dose is repeated about every 10 to 11 weeks. I will say besides the headache, it really wipes me out, Im exhausted and don't feel that well after about the third day, but the next week I start feeling well which lasts for a couple of months.

Joe
Tim62
Tim62
So sorry to read of your migraines. I have not had one, yet, but it sounds dreadful. For me, I hydrate two days before, during, and after IVIG. I take one Advil each day of IVIG, and two Advil per day, for two days after IVIG. I also need to take blood pressure meds for three weeks after IVIG, and feel lousy for a week after, no matter what I do. Hope you get relief, and please keep us updated.
judithwilson
judithwilson
yes, Joe, I also feel wiped out for a week.. Then, the second week I feel much better. I read that it takes usually 10-14 days to reach the optimal results.
Judith
vieve
vieve
Sometimes after a treatment I feel okay (usually at least a little groggy, which I can't really tell if it's a steroid hangover, or a benedryl hangover, or from the ivig) and a few times I have gotten sicker; severe headache and nausea or diarrhea. I'm not sure what it was that made a difference for me! But, as others have said, I would try drinking plenty of liquid including the day before and after treatment, making sure you eat enough, and sometimes I take Benedryl again at night (mostly to make sure I can fall asleep after all those steroids, but it might help with the side effects too.) I hope your next treatment goes okay, I know you really need some relief from your symptoms!

Judith, that's interesting that you say you feel better if you sit up! I usually fall asleep but not always.

Also, I have noticed that the times I've had a more severe reaction to the ivig, the treatment wasn't as effective in making my symptoms go away, not sure why.
judithwilson
judithwilson
Vieve,

I've tried to figure out why my head ache is so much worse in the hospital., than when I get IVIG at home. In the hospital, I am always laying down , pretty flat, as it is usually at night. At home I sit up in a recliner. Although I do sleep, I'm not laying flat. I've had treatment in the hospital 5 times and always a terrible headache. I've had 4 infusions at home, with just a mild headache.
So not sure, it's puzzling