Stimpy dosage is usually calculated by weight in the beginning and then adjusted as needed by patient response...do you know what brand you are on?

yeah, Gammaguard S/D, I am 5'7" 170 lbs.

The package doesn't talk about weight so it could have changed? I know Dr. Charlotte Cunningham Rundles discussed this briefly at last years conference. Anyways, here it is.

PI (2.1) 300-600 mg/kg Every 3 to 4 weeks...this is how I find it written everywhere...except I have no idea how to calculate that to grams LOL I'm sorry I suck...I know someone on here would :) I know Mark takes like 80grams every 4 weeks...sorry dangit I wish I knew grrrr

Stimpy,

The amount you were getting before does sound very low. I am 5' 3", and 125 and started out on 22 grams of Gammagard S/D. Since then it was reduced to 20 grams because there was waste involved with the original amount (5 grams is the lowest increment I guess).

This amount was originally figured out based on my weight according to my doctor, but he also doesn't seem to be concerned at all about how I feel at that amount. He is only concerned on whether or not I stay at trough levels of over 600.

Good luck with your new dosage, and I hope that it makes you feel much better!

Uuuuuurrrrggghhhhh! Here's what Dr. "X" was giving me: Gammaguard 200 mg/kg total dosage = 15 gmrs every month. Dr. Church has now DOUBLED the dose. I guess I am so disappointed in the fact that I have been doing this for so long and did not even think to ask Dr. "x" what he was giving me and then researching it for myself to find out what I was supposed to actually be getting. All this time feeling the fatigue. I just automatically "assumed" Dr. X was giving me the right dosage, I really like him though, but thats why you cannot let your emotions take over, you HAVE TO KNOW WHAT TO ASK FOR AND WHAT YOU ARE DOING. Maybe constantly REMINDING the NEWBIES to KNOW WHAT DOSAGE they are supposed to be getting, especially if they are with allergy and hematology docs, because THEY REALLY ARE CLUELESS.

i was told the amount was calculated by weight & other factors, no ones told me what the "other factors" are. i'm 5'7", now at 121 lbs, started at 128. i'm on the Gammaguard S/D & started at 23 gm every 4 weeks, but the 4 weeks was too long, so we changed to every 3 weeks,(thanks to the suggestions made by the experience of others on here) todays the first at the 3 week interval. i do have an infection i'm having a hard time beating, its not pneumonia, but its in my lungs, chest xray showed "globs" on one lung. i'm hoping being on the 2nd round of antibiotics, much stronger than the first, & the infusion, i'll be back to feeling less fatigued all the time.
does being on antibiotics affect the infusion? i hope not, unless its a good affect! i go on vacation august 1 & i don't want to miss it, or be sick/fatigued the whole time

Hey Stimpy - be good to yourself!! It's a learning process for all of us. It takes time to learn what questions to ask! Although I do not consider this site a replacement for good medical care, I can tell you that I have no doubt that there are people on this site who know more than the majority of doctors out there, and they get frustrated by ignorant doctors as well. Hope you start to feel better, and get the proper care you deserve! Hugs!

This is what the AAAAI says about dosage, "Considerations of dosage, interval, and route
of administration
After deficient antibody production has been documented,
infusions are usually given every 3 to 4 weeks at
an initial dose of 0.4 to 0.6 g/kg, titrating the dose and
interval between infusions to achieve a trough IgG level at
least greater than 500 mg/dL in agammaglobulinemic
patients.46 Many practitioners target a serum IgG level
equal to the pretreatment level plus 300 mg/dL for patients
with CVID. A specific maintenance of trough level greater
than 500 mg/dL has been associated with fewer infections
and improved outcomes.10,18,47 Higher trough levels
(>800 mg/dL) also have the potential to improve pulmonary
outcome.10,48 Monitoring preinfusion trough levels
at no greater than 3-month intervals, and preferably no
greater than every 6 months, might be helpful in patients
who are hypogammaglobulinemic, particularly when infections
are not well controlled. Because there is significant
variability among patients in the pharmacokinetics
of IgG, a given IGIV dose has the potential to result in different
trough levels in different patients having similar
body mass.49 An acceptable starting point for maintenance
dosing is 0.4 g/kg every 3 to 4 weeks. Although some
clinicians measure trough IgG levels frequently, others
measure serum IgG levels annually or whenever there is
a significant infection and when the clinical response to
treatment does not meet expectations. After the sixth infusion,
a steady state will have been achieved, and the dose
or dosing interval should be adjusted to achieve the optimal
clinical result. Trough IgG levels should be considered
in optimizing therapy for agammaglobulinemic and
potentially hypogammaglobulinemic patients. Treating
physicians must be mindful of patients changing body
mass (particularly children and pregnant patients), the possibility
of protein-losing conditions, or both, and dose
adjustments need to be made accordingly. When initiating
therapy, patients with extremely low IgG levels at presentation
might benefit from a larger loading dose before the
initiation of regular maintenance dosing. Some centers use
an initial dose of 1 g/kg administered slowly for agammaglobulinemic
patients. Other centers prefer smaller doses
given more frequently to initially provide agammaglobulinemic
patients with adequate levels of IgG."

My standard advise is to have an expert as the quarterback of your medical team, even if you need to travel a distance to seem them at lest a couple times a day. My definition of an expert is a physician who has taken a fellowship in clinical immunology. They are at least two to three years. They are NOT physicians whose practice is primarily allergy and only treating a few patients with primary immune disease. .
From being part of the PIDD community for the past 30 years, I've concluded that patients treated by an clinical immunologist have far better outcomes than patients treated by an allergist without specif training.

Well see, YOUR ALL right! And again what surprises me is that there are .alot of NEWLY DIAGNOSED people on here that know more then I ever learned in YEARS, even I consider NEWLY 2-3 years, and here I have been doing this FOREVER and I should have know better to ask my doctor how many grams I was getting, and I SHOULD HAVE know what the requirement was. I feel so STUPID. But now I know. Again you have to get a speciallist, I just took the only thing offered to me through medicare/medical, its a learning process, now I have found Dr. Church, Yay!