Eye Problems While on IVIG???

I experienced some eye issues which were diagnosed as ‘non-aura migraines’ by a neuro opthamologist… try to find one tho, they are rare and hard to find .
In my case…eye issues were a fog or black spots ‘floating’ thru my vision fields. Definitely a problem when driving home from infusions?
The Non Aura things didn’t hurt per se, just scary as heck. I feel it was either related to infusion rates or pre-meds side effects once stopping infusions.
In my case the ‘fogs’ have stopped and IF they resume I think I can narrow it down to sources…
As for your issues? I think you’ve got to take a good look at your infusions, rates, treatments and all other outside [‘life’] factors to see IF you can [if possible] find out what’s caused or is still causing the eye problems!
When I had my eye issues five years ago? I was lucky to have docs to see? I was tested for cardio and vascular and had my ‘eyes’ looked at thru magnifying glasses – literally and then some! I didn’t really get answers other than the ‘migraine’ thing, [never had headaches of the migraine type?] but, I got a whole lot of ‘things’ checked off those diagnostic lists!
I’ve not had problems since? But, I do know which ‘ghostbuster’ to call when I do!
Essentially? NO, you aren’t crazy, IT is NOT your imagination. And What does it mean? Ask any doc? Dunno- haven’t a clue!
Don’t panic yet.. there must be docs out there somewhere.. I believe they are hiding. 😮 With that, I can say…You know and we know…How can you convince your doc? Get copies of whatever tests were done and KEEP them then, use them in the future should you need them.
It’s essentially too much IV at once or something else…Wish I could be more specific? But I’m not a doc, just speaking from experience.
TALK TO YOUR DOCS about this all! and don’t be shy! Hope it all works..
Vision loss IS a very Scary thing! Especially when you’ve got other stuff going on! Hope and keep faith!

Why do they immediately blame the IVIG infusions? Could it be the CIDP itself & not the IVIG treatment causing these eye problems?

Since cidp is a disease of the nerves couldn’t it just as well be that and not the ivig? Had you had previous infusions without the eye issues. are you diabetic? I think this cidp takes over my health thoughts so much, I sometimes forget a headache could be just a headache and not related to ivig or cidp. Either way its your eyes they are extremely important so definitely get to the bottom of it and figure out what is causing it—-Best wishes Lori

I did have the same problem, but it was never blamed on ivig,since i was on it since 1996 and the eye problem didnt started happening until 2002 i think. I did have the black spots, coldness, fog, blurry,etc after ivig treatments and also the optical nerve got inflamed a few times. Same thing as you. And it happenned several times over the yrs. Neuro always blamed it on cidp. sed rate was always high when it happenned. Have you had yours check?

It did happened again this year. a few months after SCT. I was not on ivig any longer for a few months. They compared pictures and test with old ones and it was swelling of the optical nerve,bleeding. Gave me some drops and it got better after a few days.

Like homeagain said, it s not your imagination.

Imfan what is SCT?
Laurel

Laurel,
SCT = Stem Cell Transplant

Rossana

Dell’s first outward symptom before his first birthday was 6th nerve palsy, affecting one of his eyes.

We knew something was wrong with Dell but at that time, did not have a diagnosis. It took many months after that to find out it was CIDP.

I have no opinion about it being ivig or whatever, I am just stating it could be the CIDP itself.

Good luck.

Lori

Were you on any medications while you were undergoing the IVIG? One of the warnings on the information sheet that comes with Topamax reads “a blockage of fluid in the eye causing increased pressure in the eye”. I would check all the information sheets that came with your prescriptions.

Just a suggestion.

Mickey
CIDP Diagnosed 2007

totally related to infusions! I’d been having them often and for some times, extended periods. It’s just that they ‘appeared’ to be worse after those particular infusions [at the time?] The combo of pre-meds and ‘changes’ by the hospital I was at were unknown to me, UNTIL I iquired further. I would have, as the neuro-opth. called them – 2-7 ‘eye events’ a day! And the only way to detect them was a distinct change from your normal eye dilation AT the time of the events. As I also said, these ‘events’ did subside..to the point where I have them only 2 days a week and at that? Their severity varies, tho not as bad as at the beginning. Pupils either became super dilated or pinpoint on their own. And, are noticable, once you begin to LOOK at your eyes.
It is now simply a ‘red alert’ type of happening when/if it does happen. But, be aware it can and DOES happen. Maybe, tho I’ve not clue? There mite be a link between infusion brands, plus rates plus pre-meds that all precipated my eye problems. Or, it simply be some sort of ‘internal war’ between the IG and the immune system. I tend to believe [instinct only] that it is the latter.
I don’t know about anyone else here? But losing any OTHER senses [in addition to touch] can be frightening and beyond! Because it IS. Be honest.
Add to the mix the meds we are often on, those that affect hearing, taste and smell particularly. They are to help us, but they too have consequences.
At least I CAN SEE! And I CAN FEEL somewhat, tho distorted! For anything I can achieve? – I am grateful to the IVIG for keeping other potential demons at bay!
LyonsDen? At no time did any of my doctors indicate that I should be taken off IVIG! Pre-meds, daily meds, and infusions were all assessed in detail after this problem arose… My eyes were examined by top eye specialists and heart and vascular as well…all clean. So sometimes? Know that our bodies are protesting to ‘SOMETHING’? You will have to listen to yourself and sort out which whats are the culprits! I truly hope you find your answer.