ivig side effects
 

Just had my 3rd out of 5 infusion on Friday. Got so sick around 4 am. Fever,chills,threw up once. Nauseated. And the worst headache ever! I mean head pounding bad. Headache lasted all day but my temp is back to normal now. They ran it at 100 which was good for the first two days. Though it was a 3 days in a row back and forth drive of 12 hours not to mention the time for the infusions.I was drained bad by the 3rd day. Thing is the IVIG is working. I can feel my strength in my legs n arms. And I can stick my tongue out. Lol.my eyes weren't droopy today. So I know hydration is the key. Perhaps by the 3rd infusion I was dehydrated and it caused the horrible headache and nausea. I took ty. but it didn't help. Anyone else experience this?

I got very sick with the first round of infusion. The horrible headache, and dizzininess and nausea & diarhea and anemia. It was so bad, I did not want to try it again. The first time I used gammagard. It took a full month to feel normal again.

Several months later, my breathing became really bad. So we tried IVIG again but we used a different product, gammunex, and they did it at a much slower rate. It was like day and night the difference. No side effects and my MG symptoms improved a lot.

You should call your neuro before your next dose. There is an IVIG complication called aseptic mennigitis that gives a terrible headache.

I think the first IVIG is a terrible shock to the system and is worse for everyone. But talk to your neuro, maybe they can slow the rate or next time use a different product.

Hope you feel better
kathie

Hi huntress,
There are 2 key things for IVIg:
-rate of infusion: they should strart at 80-100. If everything goes well, they may increase the rate, otherwise they should reduce the rate,
-hydration: you must drink at least 1.5 to 2 liters of water per day during the infusion period.
Good luck,
Maurice.

I suffered pretty bad aseptic meningitis the first loading dose of IVIG in the hospital .. I got toradol through the IV for the headache (which was Awesome- non narcotic- relieved the pain great).. My temp was up to almost 103, walking hurt my spine all the way up to my head... they had planned a lumbar puncture for diagnostic purposes of what was wrong with me in the first place, and it showed a lot of WBC's consistent with meningitis .. fun :)

Anyhow.. the KEY to all my side effects is rate-- They ran me at 200 when I was first hospitalized when I crashed - this caused the worst aseptic meningitis.. Then, I never went over 70 for months, as it would cause chest pain and instant spike in my temp and neck and headache... finally we switched to gammunex (thought to be a "cleaner" IVIG by many).. and slowly we were able to creep up to 100 max now, and I now don't get meningitis anymore.. just feel a little run down... But stronger from the IVIG at the same time

and as others said - lots of water.. good luck! (Oh, i also got strange skin rashes with the rate high - on my palms of my hands - teeny tiny blisters.. again, never get them when My rate is controlled. GOod luck!

Feeling a lot better today. The headache was mild this morning and went away completely now. I do have body aches though. Other than that I think the IVIG is working for me. A night of pure sickness and utter migraine is worth it. I can stick my tongue out now, I can talk better too where as before my speech was greatly affected by the MG. Leg and arm weakness has decreased greatly as well. I can still feel ot especially if I am getting tired or over doing it but the way I felt before vs after just 3 IVIGs is a God send.
They ran it at 100 rate. Started at 50 then bumped to 80 then 100. I don't think I was hydrating enough the last infusion plus 12 hours on the road I was totally tired. I got vary little sleep too. Going Tuesday and Wednesday for my last 2 infusions before I see my neuro. Does breaking them up matter? Curious to know

So glad you are feeling better!!!

I only did 3 or 4 days of initial IVIG ( I can't remember exactly, it was a bad blur)!! I wouldn't think breaking them up would make a difference at all

So glad it is working for you too! I remember being in the hospital hoping and praying it would work .. that 2nd night inpatient, i swallowed a motrin they gave me for my headache and I coudlnt' stop smiling, as I could actually swallow it!! It's the little things, that are such big things and amazing to get back after losing them! :) Good luck !:)