I am starting IVIG soon and was just looking for some input regarding the treatment itself.
There have been other threads that have talked about IVIG but I was hoping this thread could include what your symptoms or diagnosis was as to why you got IVIG, how often you had treatment, whether or not it helped, what kind of side effects you had from it, etc.
Since I am dealing with small fiber neuropathy myself (had skin biopsy done that showed reduced nerve fiber density) if anyone has had this particular condition and could comment I would appreciate that also!
Thanks for any info.
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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My daughter has IVIG treatments once a month. Her diagnosis is immune system deficiency (most probably caused by lyme disease). She has been on IVIG for 6 months, her immune system is slowly getting back to normal, hopefully she will be able to fight the lyme better as her immune system gets stronger. As far as side effects, her back aches more for a day or so and a couple of times she has gotten a very bad headache. Make sure you go very slowly with the infusion. If you start to get a bad headache or other bad pain, stop the infusion for a while and/or decrease the infusion rate. Also, drink plenty of fluids before the infusion and if possible, take an aspirin or two the day before. If you have problems with allergies, take benedryl before the infusion.
Posts: 5 | From Florida | Registered: Jul 2008
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bettyg
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Well I will respond to my own message regarding side effects since I just started the IVIG a couple days ago:
First day during IVIG I felt fine. One of the premeds was benadryl which made me sleepy but other than that I felt good. When I got home that night, though, I was exhausted and slept for about 2 hours. What woke me up was a headache like I have never had before. Even my eyes hurt from the aching. Also I felt as if I had the flu and my body was just off. Eventually that night I took ibuprofen which helped the headache but not the flu-like feelings.
My second dose of IVIG went pretty smoothly (this one was at home). Like the first dose I felt fine other than the benadryl making me sleepy and some remaining flu like symptoms (but no headache since the pre-med pain killer I took via iv took away all the remaining headache I had from the first night). Later that night after the second dose I was very tired again but didn't take a nap. I slept off an on throughout the night and only had a small headache (didnt even need any ibuprofen that night).
So today is day #3, I am feeling ok...still a little off, but not too bad. I'll report more as I go through the rest of the treatments.
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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