another ? for kelly : )

    • December 8, 2010 at 8:28 am

      I know you have done tons of research on ivig (thank you: ) for sharing it) You told me once that ivig lasts about 42 days in our system–and i FINALLY got so that im getting it every 42 days. My ? is that 42 days for the “standard loading dose”–
      The loading dose is more ivig per lb of body weight than the maintainance dose—right??? Lori

    • GAT
      December 8, 2010 at 11:23 am

      42 days life span for IVIg my be the maximum but for many the time between each treatment is different. My infusion center put me on a Wednesday schedule. Once I got into the rythem I give them my schedule.I stick to as close to 28 days as practical. If not they would put me over 30 to 35 days and I really saw a decline the last few days and took me a while to regain what I lost. I think I now have the time and dose that keeps me going. I wish it was symptom free but that’s too much to expect. Help work out your own schedule based on how you feel.

    • December 8, 2010 at 12:06 pm

      Everyone uses ivig at a different rate. It depends on how many autoantibodies you produce and how fast the ivig gets used up. For instance when my son is sick, his immune system goes into hyperspeed to fight off the infection, but it never stops! So now we are increasing the amount of auto antibody production even more than the cidp issue (just a quick way to explain it, more detailed than that) Regarding your maint dose vs. loading dose question. A load is 2 grams of ivig per kilogram of weight. A maint. dose is one gram of ivig per kilogram of weight. So a 100# person would weigh 45 kilograms (100 / 2.2 = 45.45) You then take that weight, 45kg and multiply it by 2 (2 grams of medicine) to get a load. So a 100# persons load would be 45 x 2 = 90 grams of ivig total. For a maint dose, you do the 1 gram / kg. So if you weighed 45kg, a maint. dose would be 45 grams of ivig.

      Some research suggests that frequency is more important than amount. We get a maint dose every 2 weeks, that is what “seems” to be working for us, and I use the word seems loosely, we always are in a little more pain and fatigued as cold season begins (more
      auto antibody production, therefore using up ivig faster.)

      The ideal plan is to get the ivig to control the inflamation process long enough for healing to begin. The only way to do this is to stay ahead of the game and figure out what your dosage and frequency should be. Good luck

    • Anonymous
      December 8, 2010 at 2:26 pm

      Over the 6.5 years since I was diagnosed, I’ve found that 21 days (the “half life” of an IVIg treatment) is about as long as I can go before symptoms start reappearing on their own. Of course, there are also flares, usually brought on by summer heat and humidity, where we have to increase the frequency and the dosage.

    • December 8, 2010 at 4:17 pm

      thanks for the great advice : ) i find it difficult to determine when the ivig starts and stops working because my cidp is the slowly progressive not the type that flares–anybody else with this type and any suggestions on how to determine the ivig schedule? Lori

    • December 8, 2010 at 9:27 pm

      Hello Lori. I do not notice when the IVIg starts or stops working – I sometimes wonder if it is doing anything at all. I am on fortnightly maintenance doses. Some of my symptoms have reduced but I believe that this variation could be just the flucuating nature of the disease rather than the IVIg.
      I did have badly flucuating Blood Pressure (very high spikes) but this seeme to have moderated now and come down to normal level. My Neru suggests that I stick with the IVIg for now and see if there are any other changes.

    • Anonymous
      December 8, 2010 at 9:44 pm

      The schedule for IVIG really is subjective to each individual, with many different factors involved. Body weight, type of CIDP (progressive v. relapsing/remitting), metabolism, etc., all play a role. My neurologist started me out at a lower maintenance dose and then increased it when I had flare-ups of pain, until my symptoms were well-controlled. I receive 60 grams of Gamunex every two weeks. There can be some trial and error involved, and sometimes what worked for a while may no longer work. To an extent, CIDP is a moving target. Your best bet is to educate yourself, work with your physician, and most of all — pay attention to how your body reacts to your treatment. The goal is for the most effective treatment at the lowest IVIG dose.

    • Anonymous
      December 9, 2010 at 12:17 am

      Hi Lori – The research I’ve done states that the full life of IVIG is around 42 days. It’s really quite complicated but MarkEns (I believe) posted a better explanation on the life of IVIG than I could ever come up with. I’m sure if you do some searching you should be able to find the post. It was a while ago. Maybe if you send him a private message or email he would be able to explain it to you.

      As far as your question about the standard loading dose…I agree with what Dawn says.


    • December 9, 2010 at 2:50 pm

      yes i will look for the post you mentioned Kelly by Markens–thank you. A lot of great advice and helpful info. Im glad to know that I am not alone in knowing exactly when my ivig stops working—-but i do know i feel GREAT right after having it—i travel to MA for 2 days to get it and when i arrive back home on the evening of the second day i feel like superwoman–lol……wonder if its the ivig or the 2 day rest from work, kids etc…??? Guess i will keep a journal again now that my ivig schedule has been increased to every 6 weeks to see if i can determine when it works the best. Lori

    • Anonymous
      December 9, 2010 at 11:51 pm

      [QUOTE=Lori222]thanks for the great advice : ) i find it difficult to determine when the ivig starts and stops working because my cidp is the slowly progressive not the type that flares–anybody else with this type and any suggestions on how to determine the ivig schedule? Lori[/QUOTE]

      Lori, my CIDP is slowly progressive with occasional flares too. I can definitely tell when I get near 21 days that it is “gone”. That’s why I am infused every 2 weeks.