Two great days after IVIG then the two worst days ever

My brother had the first of his 5 sessions of IVIG that ended Friday. Saturday and Sunday were great!!! he felt wonderful and was excited to walk. Well Monday and Tuesday he said they were the worst days ever. I am hoping this is because he over did it from muscles he has not been using for 8 months. Any comments, thoughts, or insight would be greatly appreciated,

Not surprising. I had an IVIG treatment this past Thursday, and felt MUCH better on Friday. Saturday I declined a bit, but still felt better than I had prior to the infusion. Sunday was rough, and this morning (Monday) I am struggling just to walk. This seems to be the pattern with IVIG. It helps initially in the short term, and until they get they get the dose/frequency tweaked for the patient, it may keep on with this pattern. They also may need to look at supplementary treatment to coincide with the IVIG.

Hope this helps!

Your statement could have been mine. I also had IVIG on Thursday. Friday, I got my port put in and wasn't doing too well with it, but I felt better and could walk better. Saturday was a good day for me. Then the fatigue hit like a brick on Sunday and I was in and out of bed all day. More in than out. And the pain came back in my feet, back and chest. Right arm didn't want to work right either. Today, I can't hardly walk. My legs are stiff from hip to foot. Nothing wants to move when I try to walk. I probably look like Frankenstein. I don't see my neuro until Nov. 26th. I don't know if he will tweak the IVIG or not. But it is nice to have a couple of days where I can function.

eaetaylor said:

Not surprising. I had an IVIG treatment this past Thursday, and felt MUCH better on Friday. Saturday I declined a bit, but still felt better than I had prior to the infusion. Sunday was rough, and this morning (Monday) I am struggling just to walk. This seems to be the pattern with IVIG. It helps initially in the short term, and until they get they get the dose/frequency tweaked for the patient, it may keep on with this pattern. They also may need to look at supplementary treatment to coincide with the IVIG.

Hope this helps!

I can't wait till my first treatment even though so many say its up and down. I just want to feel relief even if it's for a day. I'm so glad to see posts on how people are doing. Everything seems to be dragging at this point but I know the holiday came and I still have to do my spinal tap. I need to keep reading the discussions and learning as much as I can!

When I first started IVIG back in May 2013, I had a similar reaction. My symptoms are mild, so I had been able to walk, etc., but I was a bit "tottery." Immediately after my first round of infusions the numbness in my hands and feet was almost completely gone, and I was walking much better. Then, on Saturday (last infusion was Thursday) I crashed. I had the most devastating headache of my life, and it lasted for two or three days. I couldn't even eat for two days. I suspect it was aseptic meningitis, which is apparently not uncommon with IVIG.

I also had muscle aches, dizziness, etc. It all cleared up after 4 or 5 days, and fortunately it has never come back. My neurologist switched me to a different IVIG product, and that seems to have helped (from Privigen to Gamunex).