My very first treatment of ivig caused me to get meningitis. Was in the hospital for six days. The most horrible headache and stiff neck I have ever had in my life. No word from my neurologist on weather or not this means I am no longer a canidate for ivig. I am going to try and get another opinion on my condition. I was to receive ivig over two days. Only got first round which was 8 hour drip. Does anyone have suggestion? I know I have damage to axon nerve as well. Can not even get back in to see current neurologist till end of July. I'm so disappointed because I was hoping to get improvement from ivig. Now what?????
I had the same thing happen to me just not as bad. It may not be the IVIG so much as the flow rate that is the problem. Some people can't take a high flow rate, you may need to space it out over a week for the loading dose and then maybe 2 days for the follow up does. There are all so other meds you can try if IVIG is not for you. I am on Cell cep 3000mg and prednisone 20 mg a day. I still have problems but its seems to have leveled out some.
You need to talk to your doctor ASAP the end of July is not acceptable. If your doctor can not get you in then I would start looking for a new doctor that can. Make sure you get all your medical records so you can give them to the new doctor if that’s what you have to do. I went thought 3 doctors before I found once I liked and was helpful.
I'm new to all this but yes i was gaining education here as well.
Scott I didn't know you were a member of this group ! Hi again!
For my first dose, they spread it out over 5 days. You have to drink a tremendous amount of water during this time to flush it out. On the 5th day, I experienced the meningitis headache you described. I think my body was just so saturated, it couldn't soak up the water I was drinking with the fluids they were putting in me. I haven't had this happen again with the IViG treatments. I do get dull headaches and know that means I need to down a lot more water. Please don't give up on it. If they could spread out the initial dose more, and you just keep getting as much water down as possible, I think you can get through it. I'm thinking about you. Please let us know how you are doing.