So any of you receiving treatment, I'd love to hear how it is for you. Tagging
@Learner1 and
@Gingergrrl because I know they are currently receiving treatment.
@Strawberry I apologize for the delayed reply and am happy to tell you about my experience with IVIG and answer any questions that you have (either here or via PM). I was curious, is your doctor proposing low-dose IVIG for immune deficiency (which can be done in one day or even by SCIG) versus high-dose IVIG for autoimmunity which is usually done over the course of 2-3 days?
I did high dose for autoimmunity, and also did it at an infusion center b/c I was considered too high of an anaphylaxis risk to do it at home w/a home health nurse. I also require a very, very slow infusion speed to avoid third spacing and risks like pulmonary edema (based on my history). But in general, the slower the speed, the lesser the chances of complications like aseptic meningitis, blood clots, etc.
IVIG (at least high-dose) is a challenging treatment and for me has a delayed headache, neck pain/stiffness, and immune reaction (chills, slight fever, muscle pain, etc). I have never experienced "delayed PEM" at any part of my illness but the delayed immune reaction from IVIG is pretty similar. My infusions took three full days and then another 3-4 days to recover. So in all, it would take about one week. Then toward the end, we reduced my dose from a 3-day cycle to a 2-day cycle and we reduced the interval from every three weeks, to 4, 5, 6, 7, and then 8 wks.
I did IVIG for two full years and am now completely done (but will still be doing maintenance doses of Rituximab). IVIG was a HUGE commitment, I cannot minimize the time and effort it took on all fronts, including the battle with my insurance which is not even close to being over. But for me, it was worth every minute of it.
Is it possible at all? From what I understand it takes up a full day, plus migraine and stomach issues for a few days. I need to petition my boss for time off, but need to know what to expect if I finally accept treatment.
It would not have been possible for me to work while getting IVIG but I was so incredibly ill, that I could not have worked any way (so in my case, work was not a factor). I have never done low-dose IVIG or SCIG which might have an easier recovery period. Also, each batch of IVIG is different (from approx 100,000 different donors) and some were fairly mild reactions and others were brutal.
(I know most here aren't able to work like I do, but I am mild-moderate, so please excuse the differences).
It is great that you are still able to work and you do not need to apologize for that! I truly believe that I will work again even though I am not quite at that point in my recovery yet. I am able to take care of myself and my dog again and will be starting PT in a week. I would love to work again in the upcoming year but we need to see how my remission process continues to progress.
But in a nutshell, I can't envision someone doing IVIG and then going to work the next day, but we are all different, and maybe not everyone gets the headache and immune reaction that I did.
