IVIG Treatment Symptoms
Hi friends, so I wondered if anyone else had an odd reaction to IVIG. A few days afterward all of my weakness symptoms are a lot less. The one symptom that seems to get a little worse is my double vision. Not sure if that is something anyone else experiences but also if folks have any thoughts as to why that may happen I’d appreciate it. Thanks!
I was initially put on IVIG 3 yrs ago and had migraines for 3 days after which I took Nurtec for. Now I'm back on the IVIG and I am vomiting with the treatment even with Benedryl and Tylenol premeds and I take a Zofran when I arrive at the clinic. Usually as soon as my stomach is empty I start feeling a bit better. I don't notice any improvement in my symptoms but I'm supposed to get shoulder surgery so the surgeon doesn't want me immunosuppressed.
I am getting IVIG every 8 weeks. I do get a bad headache and eye pain, but the benefits of fewer MG symptoms out weigh the IVIG side effects. I have so much more energy afterwards, my eyes don’t droop as much, and my muscles don’t feel as weak.
I usually do very well with IVIG but last month during the infusion I was impossibly cold and had an awful headache. Nursing staff called the doctor in and she explained that sometimes, for no reason they can explain "it jus happens". kept me there in the clinic for six hours and then let me go home. OK after that
Monthly IVIG infusion over a two-day period has been effective for me. My symptoms diminish in general for the next several weeks, but begin to emerge again just before the next infusion sequence. There are two problematic side effects after day two of the monthly treatments; I have severe headaches with eye swelling and eye pain, lasting about two days. The neurologist has me take a dose of Tylenol and a Benedryl tablet as premedication before each day’s IVIG infusion. I was told to double the Benedryl premeds and take Benedryl again before bedtime to mitigate these symptoms. I also wear sunglasses in the house on those really bad headache days. By three days after IVIG infusion therapy, the side effects are resolved. My prevaling gMG symptoms are (1) eyelid droop with blurred vision, as the day progresses, and (2) arm weakness with shoulder and neck pain. The neurologist tells me that IVIG does not improve MG, but inhibits its progression. After one year of treatment, that seems to be the case for me.
