oh yes.. been there.. I have had aseptic meningitis three times in the past 2 years.. worst time during my loading dose (however with that headache I had a temp of almost 103, couldn't move my neck at all and just walking hurt from my tailbone up to my head - entire spine)..

I agree with what everyone else has always said - drink TONS of water.. I drink probably 10 or more regular bottles of water during an effusion, lots before and for a day after.. i get so tired of having to use the bathroom as a result, but it helps!

RATE is key - After my initial loading dose (they went up to 210ml/hr at that time - causing the worst mengintis I have had).. I couldn't go above 70 for about a year.. it took almost 9 hours to infuse.. but in result it made the IVIG more effective (get meningitis and it made me so sick, I didn't have as good of positive results from the IVIG).. I am finally up to 100..

A few weeks ago a new nurse accidently programmed the pump to 200 and it was only at 200 for 45 minutes (i was knocked out from benadryl and awoke with a KILLER headache and a fever--- it happened that fast)..

I feel bad for a few days, but notice initial swallowing and breathing improvements that night.. the real difference comes at day 4 post infusion - it's a miracle! my 2nd ivig round of infusions (3 weeks after loading dose) i felt 110% it was crazy! now good, but not nearly as good..

Mine lasts anywhere from 10-14 days before I really start feeling it wear off.. by week 3 I am having serious swallowing and breathing issues and my hands are floppy!

Good luck!! keep us updated!

I just finished day3. Two more days to go. It took a little over 5 hours. The headache is a lot better. Swallowing is improved. Muscle pains is almost completely gone.

i have no fever or side effects except the headache and extreme tiredness. Thanks for all the advice.
kathie

Kathie that's great news and thanks for the update, it's great that your having a positive response already.

Best of wishes as you finish out the IVIG series, thanks for sharing your experiences.

Take care Kathie


Joe

Be sure and have pain meds like Vicodin in case it gets really severe, no need to suffer! I have gotten aseptic meningitis several times from IVIG, which is not harmful but very painful. As others said, the infusion rate is key. I can't go over 60 ml EVER.

Also, take Ibuprophen and Benadryl round the clock, for up to two days after the IVIG. My neuro says Ibuprophen is shown to be more effective than Tylenol.

Sometimes people get a more severe reaction to the initial 5 day dose but do better over time with it spread out. I have been getting it two days every other week for 3 years now.