hi all,
i'm the person who started this thread and i'm here to give an update on my gamma globulin treatment.
in short, i am holding my breath, as i am very happy with the early results. i'm holding my breath because i have had good results before at the start of a treatment, only to lose all gains later, just a few months later.
the amazing part of this whole thing is how utterly serious everyone (insurance, Acreedo pharmacy and the nurse they sent to my house, etc) is taking this dx of Primary Immunodeficiency Disease and the resulting gamma globulin treatment. case in point: i got sent a HUGE box full of supplies for the home infusions and a nurse came to the house to teach me how to infuse, etc. i assume the pharmacy (Acreedo) gets a lot of money from my insurance for this, as they have really taken this seriously.
before i tell you how i have done after each of my 4 shots to date, i'll mention that i am on antivirals (Famvir 500 mg 2x/day) and have been on them for 10 months now, but without great results. i did do well on the antivirals twice (yippee!), but it did not last (once it lasted for 1.5 months and the other time the good results lasted 1 wk). that is why my doctor thought this gamma globulin treatment could help me. he wanted to boost my immune system so that the short-lived good results i had gotten from the antivirals would last longer than the short spells they lasted. all this is discussed in my first post on this thread.
also, fyi, as a background, i have lots of chronic viruses and infections, such as EBV, HHV6, parvo, mycoplasma pneumonia and lyme (and others?). but i rarely get colds or anything.
anyway, so my ME/CFS doctor's standard treatment for this diagnosis of PIDD is 10 grams per week of gamma globulin, administered in a weekly subq infusion via pump (either using the brand called hizentra or gammagard). but i had found in my research that a number of well-known ME/CFS docs do just 1 gram once per week. or less. so i decided to go super low (low dose) and super slow. that is my usual with all meds, because i'm hyper sensitive to all meds. (but fyi, i have talked to other ME/CFS patients who do 10 grams per wk, one is upping to 12 grams, too. so i think everyone is different.)
it has been like this for me so far:
wk 1: GammaSTAN, 1/12th of a gram of gamma globulin (yes, that is "one twelfth" of a gram)
date: Feb 19, 2014
administration: IM shot in my doctor's office
reaction: a bit sick the days after the shot, then fine, not better or worse
wk 2: GammaSTAN, 1/3rd of a gram of gamma globulin
date: Feb 26, 2014
administration: IM shot in my doctor's office
reaction: very very sick for a full week after the shot, each day getting worse. then, suddenly, greeeeat for 3 days in a row (i.e. until i did the next shot). markedly increased energy and stamina, and happier!
wk 3: GammaGARD, 1/2 gram of gamma globulin
date: March 7, 2013
administration: subq shot via infusion pump, at home
reaction: very sick for 1 day, then greeeat for 3 days. markedly increased energy and stamina, and happier!
wk 3.5: GammaGARD, 1/2 gram of gamma globulin
date: March 11, 2014 (today!!)
administration: subq shot via infusion pump, at home
reaction: To Be Determined