Eye Problems While on IVIG???

    • Anonymous
      January 3, 2011 at 10:48 pm

      Having been on IVIG for 5 months every four weeks I thought that everything was going fine. I expected to get a headache for a couple of days after the infusion and that is the only side effect that I had…I thought. I had a routine eye exam three days before Christmas which put a real damper on the holidays. There was edema behind both eyeballs where the optic nerve enters. The right eye showed signs of hemorrhage and I was referred immediately to a retina specialist. According to that doctor after tests were done, it stopped bleeding spontaneously. When asked why it happened he said that the optic nerve became inflamed and caused a vein rupture. I had these eye doctors send their reports to my neurologist who I saw the week after Christmas. He said that he had never had a patient who had this problem but he took me off of IVIG just to see if it made a difference with my eyes. Have any of you experienced this problem because of IVIG???

    • Anonymous
      January 3, 2011 at 11:59 pm

      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!

    • Anonymous
      January 4, 2011 at 4:44 pm

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

    • January 4, 2011 at 8:50 pm

      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

    • Anonymous
      January 4, 2011 at 8:59 pm

      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.

    • Anonymous
      January 4, 2011 at 10:02 pm

      Imfan what is SCT?

    • Anonymous
      January 4, 2011 at 10:27 pm

      SCT = Stem Cell Transplant


    • Anonymous
      January 4, 2011 at 11:12 pm

      Thanks for your thoughts about my eye problem. I have checked out negative for diabetes, but I have had high blood pressure for 20 years which is under control with medication. Yes, I thought it could be caused by the CIDP which varies with each of us. But, I noticed a peculiar feeling like the back of my eyeballs were slightly sore after I got the first IVIG treatment. I did not think anything about it until I got the results of the recent 😮 eye exam. After four years of misdiagnosis I immediately thought that maybe I had something else such as MS which can cause blindness. But I was told that my brain looked too good for that disease….no plaques. I am scheduled to go back to the eye doctor next week. He is faxing the results of the exams to my neurologist so they will all be on the same page. Also, I am due for a brain and back MRI in March. I will keep you posted.

    • Anonymous
      January 5, 2011 at 10:20 am

      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.


    • Anonymous
      January 5, 2011 at 5:59 pm

      I know that it must have been really tough to diagnose a child so young when he/she cannot tell you where it hurts or discuss anything with the doctor. It is bad enough for us “grown-ups” and I have really been through the mill these last few years. The eye problem just popped up suddenly and I really just thought that I had eye strain from using the computer a lot. I am not one to complain and have a fairly high pain tolerance, so if I had not gone to the eye doctor for a routine exam then I still would not know there was a problem until it was too late to save my vision. Anyway, they are keeping close tabs on it now so that makes me feel better. I guess it pays to check out any symptoms even the vague ones might lead to a significant problem.

      As a grandmother of seven I worried that I had passed on a bad “gene” to them. I felt really guilty. I was told by the neurologist that CIDP was not caused by genetics but there might be a tendency toward auto-immune diseases. My father and his brother both had very severe rheumatoid arthritis. My aunt (on the other side of the family) was diagnosed with Lupus and now I have CIDP. Go figure!!! I am still keeping a close eye on my grandchildren in case they develop anything unusual. I can only imagine what you and your child affected by CIDP have to endure. I wish you the best in 2011 🙂

    • Anonymous
      January 14, 2011 at 3:03 pm

      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.

      CIDP Diagnosed 2007

    • Anonymous
      January 15, 2011 at 7:44 pm

      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.

    • Anonymous
      January 16, 2011 at 1:29 pm

      After I experienced the eye problems during the Christmas holidays I made sure that the eye doctor shared all test results and information with my neuro. I met with the neuro while getting the IVIG treatment in late December. He said that he had never had a patient with retinal swelling and hemorrhage around the optic nerve related to the IVIG treatment. I have had no pupillary changes. I only experienced a slight blurriness in my vision and did not realize anything serious was happening to my eyes. The neuro temporarily stopped the IVIG just in case it was related to the IVIG. Last week I had a followup appointment with the eye doctor and can happily report that the swelling had subsided and that there was no bleeding noted. No treatment was given for my eyes and I had had IVIG a couple of weeks before. The eye doctor concluded that the IVIG was not the culprit. He is now thinking that it might have been caused instead by the “disease” process—ie….the CIDP!!!!! I told him to please share this information with the neuro since he took me off of IVIG because of the eye problem. No word yet from my neuro. I was taking IVIG every four weeks so I am not off of the schedule yet. I am really concerned that I will regress if I do not go back on IVIG, but the neuro wanted to see what happened if I stayed off of it for a while. Since starting IVIG over six months ago I have only had minimal improvement…nothing dramatic. It is very frustating and expensive but if I had not started IVIG I might be worse off right now. I am also due for my yearly brain and back MRI. We will see.