I had been on IVIG for several years with good results, and then recently, I began feeling that I was experiencing adverse symptoms afterwards. Has anyone learned if IVIG becomes less affective over time?
Posted by Tracy9 (Member # 7521) on :
Not yet....I've been on it for over 3 years and pray it never stops working, or I'll be in huge trouble. I do get side effects, and there is not much rhyme or reason to them. Sometimes I feel flu like, sometimes I get aseptic meningitis. Also, some rounds work much better than others. I joke and say "this time I got a Superhero donor!" Or "this time my donor must have been a skid row bum."
Posted by Sammi (Member # 110) on :
Have you been on the same brand and the same dose for some time? Do you think you may need a dose increase?
When I had to switch infusion centers, the hospital pharmacy kept switching brands. It was not until I had a few infusions of a different brand that I realized it was making me sick.
I asked my immunologist to run my levels, and they were lower than when I started over a year before! I got a dose increase and now get only the brand that has helped me. These two things have helped a lot and my numbers have also improved.
Posted by Rumigirl (Member # 15091) on :
Tracy, you STILL get aseptic meningitis??!! Wow!
Truthfully, I had a similar reaction recently, but I didn't go to the ER. And just last week, I got a severe migraine afterwards, as the infusion went too fast. But I'm having daily migraines anyway, so it's hard to separate it out.
Oh, to be normal!! Oh, well, that ain't happennig.
Posted by Pocono Lyme (Member # 5939) on :
I, like Sammi, had my brand switched after years when the hospital was bought out.
They switched me in January and my numbers dropped back to low range and haven't changed. Have you had labs recently?
My LLMD just ordered subQ so I can hopefully get back to where I was.