Connect
Has anyone had lingering side effects from IVIG?
One year ago I was diagnosed with CDIP. In May, 2025 I received four daily IVIG infusions. I suffered side effects of headaches, vomiting, and low back pain. Subsequently it was determined that I was deficient in IGA which exacerbated the side effects. The headaches and vomiting eventually went away The back pain has improved but still lingers. Has anyone had that experience?
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
Just headache, have another infusion on the 12th and 13th weeeeeeee
I get really bad migraines when I don’t drink enough water. During infusions you are supposed to drink 10 glasses 8 ounces of water the week before during after the infusions to make sure you are well dehydrated. No caffeine during this time either. Caffeine causes the dehydration. If I don’t drink enough water the side effects are worse. The nurse doing my infusion told me how to avoid the side effects. I have been on it a year. I can tell a big difference between drinking enough water and not drinking enough water.
I made a mistake trying a tall Dubai chocolate matcha never tried matcha tea. It had over 40 mgs of caffeine this infusion is killing me. I forgot I had my infusion the same day. It has been a very bad migraines. Normally I drink passion tea caffeine free and try to stay away from caffeine stimulates the nerves making neuropathy worse.
-
Like -
Helpful -
Hug
1 ReactionI have been on weekly IVIG infusions since February 2020. Other than being a bit lethargic and nauseous during the first few weeks, I have never had any difficulties. I will be switching brands from IVIG Gammagard next week. I would be pleased to share my experiences with the transition to a new brand.
I have been getting IVIG infusions every 4 weeks for the last 7 years. The only time I have side effects is when they "push" the infusion faster than normal.
You might ask the RN to slow the inflow.
Good luck.
-
Like -
Helpful -
Hug
1 Reaction@mmhb1
I’ve been on Privigen ivig with no negative results. Last year during the bad hurricanes I missed a session. That resulted in some backsliding. Then I had to do 5 days of catchup but had no problems. Since then I’m back on schedule.
@itsmeagain
Good luck
My switch to Octagam 10% 400 mg/kg went smoothly. I was able to keep the same speed of a 3 hour dosing through my PowerPort. Other than a bit of an upset stomach afterwards, there were no issues.
I am taking Octagam for two years now and had no problems. I was tested before I started and that of my four classes of IGG, I was deficient in three of them. I guess my body was glad for the help.
Thanks for the info. I think my doctor wants to proceed with plasma pheresis for my CDIP. Anyone have thoughts or experience with that?