IVIG- starting it at an OK place- still turning of pages?

[LaurenK]

I am doing IVIG soon. I'm functioning relatively well, about 85%... but my reactions to exposure are awful so my neurologist would like to do IVIG just to modulate the immune response. When you're at a higher place, do you still see a lot of the turning of the pages?

Edited August 21, 2013 by LaurenK

[LaurenK]

anyone??

[JAG10]

My girl is 13, not sure how her experience will relate to an adult.

 

Once she was in a decent place re:symptoms, she did not regress with subsequent IVIG. She still reacts to strep, but it lasts fewer and fewer days with abx increase or prednisone.

 

If I were you, I would mentally prepare myself (whatever that means to you) for things getting worse in some way. Perhaps it won't be behaviorally, but you get nauseated. I will say this from my girl's experience: little reaction equated to little improvement but once you are in a good place, improvement is more difficult to appreciate. When things are bad, then they get worse, then they get much better...it's easier to observe.

[LaurenK]

there's really no one else who has had IVIG on here who can possibly share their experience?

Edited August 4, 2013 by LaurenK

[qannie47]

Hi Lauren, You may not be getting a lot of responses because your question is a little confusing....If you are at a good place, 85%, it makes sense that you would not see a lot of "turning of the pages"....No? Perhaps I am not understanding your question....would you mind clarifying a bit? Thanks,

[SSS]

With my dd's 2nd high dose IVIG, there were NO turning of the pages.

None.

Just a happy content child out the gate.

For 4-6 weeks.

Then it all wore off.

And who knows if we did another, would the results be the same?

Was it that particular pool of blood donor antibodies that created the magic?

Dunno.