New IVIG protocol?

    • Anonymous
      May 13, 2011 at 6:43 pm

      Recently, when I had my last IVIG infusion, I received a lesser amount than usual because the infusion nurse told me the protocol had changed. Now, instead of getting 1g of IVIG per kg of body weight, it is being calculated per kg of “ideal body weight”. For me, at 6′ 4″, my ideal body weight has been determined to be 85 kg or 180 lbs which is pretty thin. A person of this height and weight would look like a stringbean.

      The infusion center is in a Boston area community hospital that is part of a larger group called Partners HealthCare which includes a couple of major research centers. Presumably, they would have research to support this new dosage calculation, but I haven’t seen or heard of any. Has anybody else heard of this or had this experience?

    • May 13, 2011 at 7:53 pm

      no– i have not encountered this, and got ivig last week not too far from the boston area??? I am currently getting 2 gm per kg—loading dose. I am guessing this is an insurance company decision?? How sad when people who do not have medical experience or education make these sort of decisions instead of doctors who have dedicated their life to educating themselves to help others. Lori

    • Anonymous
      May 13, 2011 at 9:26 pm


      And, let me emphasize, this discussion has nothing do with anybody’s BMI, weight level, overweight or obese status. OK?

      I found some info on this.

      1. From The Centre for Immunoglobulin Therapy in the U.K.

      “[I]…Fat or thin?The dose of immunoglobulin depends on the patient’s weight, but since immunoglobulin isn’t fat soluble, perhaps ideal body weight is more important than actual body weight. …[/I]”

      2. The 2nd info is from a .pdf file which I don’t care to try and re-type. It is at

      Basically, it is a 2008 Cleveland Clinic Pharmacy article dealing with Formulary Restrictions (yep, that’s right, we’re headed right to what Lori said, in the poster’s case, it is probably an Insurance Company or Infusing Company ruling. The key point goes something like this- dosing is based on ideal body weight when following the Formulary Restrictions.

      3. From a one patient study reported 1/20/2010 in US Pharm. 2010;35(1)(Oncology suppl):4-12.

      “…It has been suggested that using the ideal body weight for dosage calculations may decrease adverse events.14,15 However, this has not been specifically studied. The use of an adjusted body weight in obese patients may also help minimize thromboembolic complications. Dosing is usually based on actual body weight, which in the obese population may result in a high intravascular concentration, predisposing patients to hypercoagulability due to increased serum viscosity….”

      Note that they do footnote two reference articles (#14 & #15) from which they derived their data. Further, please note that I know it is a one patient report. That is not the point. The point is what they are talking about.

      I would focus on the notion that Immune Globulin (IG) is not fat soluble and therefore unused by those cells. Therefore, if it were me paying for it out of my pocket, I’d do it their way.

    • Anonymous
      May 13, 2011 at 9:51 pm

      the ‘protocol of ideal body weight’?
      I just read the dosing info of both Gammunex and Gammagard and neither uses that particular phrasing.
      I have to say GEESH! We get sick, hurts to move around much and then other things happen and you want me to maintain my IDEAL WEIGHT?
      Are the docs going to provide ‘Jenny to Go’ for free? Not that I eat much because of all this stuff anyhow.
      Find out WHO is dictating the ‘body weight’ aspect…get their criteria and then appeal. It can be done, but it IS time consuming and additional stress and hassle than we want. But, if you need that proper dose? Go for it!
      Wishing won’t make it happen. Persistence just might?
      Good luck and pulling for you [If I don’t fall over that is!]
      Keep faith in what’s right, not what some clerk in a hive says must BE SO!

    • Anonymous
      May 13, 2011 at 9:59 pm

      [QUOTE=homeagain]… and you want me to maintain my IDEAL WEIGHT?[/QUOTE]
      It has NOTHING to do with maintaining the ideal body weight. The issue is about dosing based on what the patient’s ‘ideal’ body weight is. Allegedly because IG is not fat soluble.

    • Anonymous
      May 13, 2011 at 10:06 pm

      Not one ‘full prescribing information’ description sheet has the word IDEAL in it. It is strictly body weight.
      Knowing your research prowess? IF you can find some? I’d sure like to know!

    • Anonymous
      May 13, 2011 at 11:31 pm

      I smell a rat. An ideal-body-weight rat, to be exact. Anytime I hear of some protocol leading to less medicine (especially expensive medicine), I can’t help but think an insurance company wants to spend less. Next, the protocol will call for dosing based on the ideal body weight of an anorexic Scandinavian dwarf! :rolleyes:

    • Anonymous
      May 14, 2011 at 11:03 am

      As The Cleveland Clinic Pharmacy position paper made abundantly clear, the ‘ideal’ weight dosing protocol falls under the auspices of the Cleveland Clinic “Formulary Restrictions Guidelines.”

      What restrictions? A restricted supply of IVIG…. Therefore, should you ever receive IVIG at their place, and the restrictions are in place- guess what?

      I can only say thanks to garyd for making us aware of this. The first cracking sound of thin ice may be the only warning you get.

    • Anonymous
      May 14, 2011 at 2:46 pm

      Once upon a time in a land far far away there was a differentiation between small bone and large bone individuals of course that lead to more paperwork Since paper came from tree and the people of the land loved trees, some all knowing bureaucrat decided that they could save trees by having only one standard and so the decree went out…[you guess it based on the small boned individual!]

      Now those of us who were 6′ 6″ and could not float to save there lives knew something was off However, the minions of the all knowing bureaucrat enforced the new standard [which by the way significantly lowered the weight I had to maintain to stay on active duty]

      Now enter the ‘ideal weight’ vs actual actual weight as a means of determining dosage. In my case my ‘ideal’ weight is something that, at my age, could be written with an i attached after it – it is totally imaginary. The dial on the scale passes it with something close to the speed of light. With the cost rising medication I can understand how some insurance bureaucrat might take a lesson from the past and change the dosage to ‘ideal’ rather than ‘actual’. It would both save money and encourage us to eat less and exercise more so that we would achieve our ‘ideal’ weigh and live a more health life style. You know what is really terrifying is that almost makes sense as I read it.

      I agree with Goodney – I smell a rat a big one

    • Anonymous
      May 15, 2011 at 2:54 am

      [FONT=Times New Roman][SIZE=3]There are three questions here. The first is how to determine “ideal weight”. For most people, BMI has been shown to be a reasonably close measure of body composition, with an ideal weight typically being a BMI of 22 to 23. If you have, as Jim does, good reason to believe that it does not fit you, you should determine the percentage of your total weight from fat. A typically healthy number is between 10% and 15% for men and 15% to 20% for women. Whatever weight that works out to for you is your ideal weight.[/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=3] [/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=3]The second is whether Ig is used by fat cells. I don’t have an answer for that. While I found the US Pharm issue Yuehan mentions, I could not find the oncology supplement. However, if Ig is not used by fat cells, then to me it makes little sense to base a dosage on total body weight.[/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=3] [/SIZE][/FONT]
      [SIZE=3][FONT=Times New Roman]The third is whether, if Ig is not used by fat cells, all the dosing data is off the mark; that is, does the “ideal body weight” dose need to be higher than typically accepted. I have no data on this.. I [I]suspect[/I] that it is, just because of the proportion of the population that is overweight or obese. How far off the dosing might be, though, I don’t know. [/FONT][/SIZE]
      [FONT=Times New Roman][SIZE=3] [/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=3]~MarkEns[/SIZE][/FONT]

    • Anonymous
      May 15, 2011 at 11:52 am

      For those who’d like to read more:


      An excerpt: “[I]…PP&P: Do you always dose on actual patient weight?

      JS: There is much discussion as to what weight should be used when determining IVIG dosing. The assumption has been to dose based on the patient’s actual weight; however, if you study the pharmacokinetics of IVIG, as an immunoglobulin, it does not really distribute into fat, so the volume of distribution may in fact be higher in a patient at an ideal weight as opposed to a patient who is obese. Given this, once a patient’s weight is greater than 100 kg or their BMI is greater than 30, it is advisable to adjust their IVIG dose as follows to determine a more accurate dosing weight: first, take the difference between the patient’s actual weight and their ideal weight as defined by the Metropolitan Life tables and divide this in half; then, add this figure to their ideal weight. Based on this formula, if a patient weighed 120 kg and their ideal weight was 60 kg, 90 kg would be the dosing weight. This means that if the prescribed dose for the patient is 1 g of IVIG per kg, instead of 120 g, the patient would receive 90 g. Dosing based on this method significantly impacts both cost and waste… [/I]”

      Does ‘js’ have good credentials? couldn’t say.

      “.[I]..Jerry Siegel, PharmD, FASHP, is the former senior director for pharmaceutical services at The Ohio State University Medical Center, where he worked for over 35 years…[/I]”

    • Anonymous
      May 15, 2011 at 11:42 pm

      We all go on Topamax to lose weight or just starve ourselves? DUH? SO WE CAN GET IVIG?
      I AM handicapped. I do NOT walk well nor long nor often..if I can help it?
      I get tired walking, and I also get grumpy? Ever see an unhappy alligator? That can be ME when I get grumpy. I am becoming tempted to carry a mini-taser to get around nasty people tho. Consider that grumpy!
      IF in any doctors diagnostics and or prescriptions that there is introduced the factor of weight w/o the fat factor? Since most protocols now assess by weight and weight only? To introduce a new factor? Well, To me? Spells CLASS ACTION DESCRIMINATION Lawsuit?
      I Bet you? I’m gonna look up Jerry Seigel and find out as much as possible. Will reveal only what is relevant..
      I do not know what to say to this all other than utter disgust. Then advocacy whereever it is should be employed. Tho most are not educated nor trained in this quarter? Time to learn. How you learn is up to you.
      Hope for all.

    • May 16, 2011 at 10:20 am

      Just a thought, bmi must be a factor. For instance a very lean person is not a good candidate for sub q, you need fat to absorb the ivig. So it seems that from a sub q point there would be a correlation between excess body fat as opposed to iv.

      Regarding the topomax comment. It is totally irresponsible to suggest taking topomax to loose weight. While that is a side affect of the drug, that could be positive for some, it is hardly a reason to suggest it even in jest. Topomax comes with many other ugly sideaffects. I am going to start a thread about topomax, as it was offered as a suggestion of our continual headaches.

    • Anonymous
      May 18, 2011 at 2:29 am

      I just tried subq a month ago and I have plenty of cushioning from mass steroids and lyrica. But for some reason my body would not absorb. They increased my needle sites from 3 to 5 and my infusions stayed over three hours and when I would remove each needle plasma would drain out. The only reasoning they had was that my cells would not absorb which did not surprise me. I also had severe problems with central lines and really any iv. Luckily my port has lasted 5 years. If the subq would have worked it would have been great. Feel free to email me if you have subq questions. I have a great neuro and pharmacist. I have been doing gamunex at home with a nurse for 6 years. I have to admit I was going to miss not having my nurse around, after all we solve the worlds problems in two hours twice a month! I would not have been able to do subq alone. My hands are more like that of an eighty year old instead of a forty something year old.