another ques about ivig…so I get it right

    • Anonymous
      April 23, 2009 at 10:29 am

      I”m trying to figure out what my maintenance dose is. That is suppose to be 1g/kg, correct ?

      it’s your weight divided by 2.2 ?

      So for the maintenance dose then…say it’s 80 or 100…would that be it for the month or can it be that whole amt say, twice a month or ev three weeks ? Shouldnt it be set to when you need it ? I know there is only so much of a half life and all that. What I want to know is can I get the whole amt at once ev two weeks if I needed it…I think I’d go every three…
      What sense does it make to split it in two ? 80g a month. I’m confusing myself.

      I get 80 a month…40g every two weeks…I wish I could get 80 or even 60 every two weeks.

      I just wanna make sure I have this right before I see a different dr.

      What about an immunologist ? The nurse from the home health referred me to one…not sure if he can see me…he does treat with IVIG but it’s mostly patients with CVID. Not the same.

      thanks for all your help !


    • Anonymous
      April 23, 2009 at 1:44 pm

      Call the immunologist’s office as ask if he/she see’s CIDP people as well as CVID. Who knows? Might be that he/she does! Then make an appt [if your insurance isn’t the picky type that requires ‘referrals’ for everything and go with it. Explain that you have concerns about your progressions of neuropathies in various areas and how this is affecting your life. That you want to feel really assured that the dosing you’ve been getting of IVIG is consistent with most protocols.
      I hope that you have a set of ‘records’ updated on key tests for reference. Tho, most docs prefer to do independant tests on their own…it’s a quirk they have, it seems.
      Also, never EVER ‘dis’ any prior doctors! “You aren’t really communicating well”, or that “you are feeling something is missing in either the treatment or the testing”. Leave a door wide open for options.
      I found out just not quite too late that second opinions can and do save lives!
      Also, check out this doctor’s name on the internet….who they affiliate with, what papers they have written, what medical boards or research they are involved with, etc.
      Lastly, many doctors are stingy regarding IVIG due to their prior training. Others are agressive and others somewhere in the middle. For your current neuro? I suspect he/she is not gonna up your dose without some additional input. Maybe this new doctor will get the ammo you need to get what you need.
      Nothing ventured [tho tactfully?] nothing gained.
      Worth a try, anyhow. Good luck!

    • April 23, 2009 at 3:30 pm

      Woman!!!! Take a deep breath!! Formula first.

      Maint dose = 1g/kg (as you said) it is your weight in kilograms, as you said. So if you weighed 100lbs, you divide it by 2.2 100/2.2=45.5
      So a person who weighs 45.5kg would get 45g of ivig.

      Load dose = 2g/kg so you take your weight in kg and multiply by 2. A person who weighs 45.5 kg would need 91 grams as a load.

      Here is the part that has no formula, only trial and error to find your own individual schedule. I would say we already know a maint IS NOT WORKING FOR YOU. At this point the best thing to do would be to start fresh. For a few months of loads you will have to pay close attention to your gains and when you regress, then you can adjust accordingly. You never really have gotton a monthly load if I recall, it has always been some ridiculous amounts here and there. You are right, there are full/half lifes. The problem is, that each person is different with those numbers as some have a demylienating process that works faster than others therefore using the ivig up faster. The thing I think your doc was trying to achieve with bi-weekly infusions waqs to keep some level of ivig in you at all times. For instance, because we do not know how fast you are using it up, he figured giving you some more often offered you a better chance of keeping your levels up. The problem was is that it was not enough. By his own admission, he does believe in the process of flooding the body with antibodies to choke the autoantibodies out, he just did not achieve the flood because he did not give you enough.

      If it were me, I would say to the new doc that we have already tried a low dose high frequency and that did not work. Let him know that you would want to start either at loads every 30 days or 21 days for a good six months. If he is hesistant, at least insist on a load every thirty days as a trial and then possibly every 21 days. You have to let him know that this is your life and you need to get it back or at the very least stop the progression.

      About the immunologist. It is true, they do mostly see immune deficient, as is the case with Kevies immunol. (we see him and neuro) He was helpful in suggesting a different brand and Kevin’s reactions as of last month are better. We are getting treatments right now we will see how it goes this month. I asked the imunol if Kevin could have been using up his ivig faster since Nov since he has been sick so many times and he said yes. So I am assuming that is what caused his backward slide in addition to the fact we have been reducing towards a maint. dose. We are now at loads for a few months.

      If the doc suggests a new ncv/emg, it might not be a bad idea, you can have a more recent look at where you are and use it as a tool farther down if you need a comparison. Also, a pt eval. might not be a bad idea. Instruments are better guages to measure stregnth than the subjective neuro resistance pull and tugs. You would be able to have concrete evidence to show the necessity of the ivig. Ask for a pt eval w/ the new doc if he does not suggest it.
      Dawn Kevies om