my first ivig
 

went in hospital sun - flew into town, got to hospital about 3:00 and after waiting for a bed till about 7 pm they started IVIG about 9/10 pm. next am feeling very weak. On monday although supposed to start IVIG at 7:00 pm they didnt even start till about 10:30 which meant i didnt get to sleep till after 1 am and then was interrupted all night. no surprise i woke up feeling really really weak yesterday. i then went into lawyer mode and told them unacceptable for me to sit around all day feeling lousy and then keep me up all night and insisted they start ivig during day (squeaky wheel gets greased). yesterday they started ivig at about 4 or 5 finished by 7 pm and although i had some REALLY strange dreams, I woke up feeling much much better today. today is my last treatment and i will be discharged tomorrow. My doctor told me to stay in town till Friday so i am leaving hospital and going to a hotel.

I am hopeful I will actually be up to seeing some of the nearby sites tomorrow (hotel is in downtown area near to museum and restaurants)

Stephanie

I hope that you feel a lot better from the treatment. :hug:

Yep, STAY in town. I got aseptic menigitis after my second day of IVIG.

I suggest that you CONTINUE to hydrate -- at least eight 8 oz glasses of water per day -- maybe 10. (Just don't drink to the point of water intoxication.)

what were signs of Aseptic meningits? I have had some bad headaches but i think due to lack of caffeine.

Last night I took pain med (maybe that was why weirdo dreams? - i had many but one was i dreamed i went on a vacation and when i checked in was really cool, horses for riding, dolphins to swim with but while i was looking at the horses and dolphins, I realized it was nudist place (which was NOT ok with me) so i wanted to leave but all my stuff had been stolen (money, electronics, id, etc) so I couldnt leave. I was very happy when nurse woke me up to take vitals. :-)

Symptoms for me: worst headache of my LIFE......and I've had some doozy migraines. I took migraine meds all night long after 2nd day of IVIG -- got NO relief. Went to ER next day per neuro's advice. Was given IV demerol and phenergan -- barely touched the pain. They tried to give me morphine (against neuro's advice), but it made me nauseous.

Afterwards, I continued to have headaches, rashes, fever, aching -- just felt rotten for about a month or so. Going into IVIG I was actually ok, MG-wise. Doc was trying to prepare me for thymectomy. IVIG sent me into a 3 month exacerbation. :(

From what I have SINCE read, migraine sufferers are most likely group to get aseptic meningitis.
http://www.medscape.com/viewarticle/413703

For so MANY, IVIG is "go-go juice". Hope it works MAGIC for you, Steph!!

me too. :)

I used to get Migraines (years ago when I was on the pill).. and I got aseptic mengingitis (three times total.. one time badly and confirmed by LP)..
The 1st time I got IVIG I got aseptic meningitis (due to the rate going to fast).. I had a HORRID headache and my entire spine hurt, and I got a fever and awful body aches.. If i just walked across the room my entire spine hurt all the way up, couldn't turn my head due to the neck stiffness and pain and a THROBBING nauseating headache.... I also got a rash too..
Now that I have gotten used to all this IVIG stuff, as long as we control the rate I have no problems!
Good luck! Hope that it works great for you!!!

yesterday nurse didnt give me fluids before ivig and i was getting ct scan of thymus so not able to drink as much as i would have. anyway i didnt realize she hadnt given me fluids till it was too late and this am horrible headache (but not as bad as ya'all describe so i will just grin and bear it). lesson learned. :-)

hard to tell if feeling better otherwise bcs hard to get a good nights sleep when nurse keeps waking me up every 1.5 to 2 hours! for me if i dont get good sleep i feel lousy next day

Gotta get that rest. Good rest does more for me than any of the Meds.
Mike

Got a good nights sleep in hotel last night and i woke feeling better (im not suggesting i feel like i am cured, but i do feel much better, still issues but not nearly as severe). So far, i am a fan of IVIG!