How frequent can you get IVIG?

    • Anonymous
      March 4, 2008 at 10:50 am

      I have gone through so many threads trying to find out the answer to this and can’t. I had a first round of IVIG in November with about 6 hours of improved walking. In December had another round with Solumedrol for 3 weeks of improvement. Due to an insurance snag I didn’t get another round, meaning a loading dose, until the week before last in February. This was the most amazing results for me, I went out of the house without a cane, felt like superwoman, etc. BUT it only lasted 8 days. I’m now schlumping around with the cane, fingers and hands missing typing keys, can’t walk well, etc. Each time I get a full loading dose. My understanding was that it was in my system for about a month.

      I saw on Norb’s thread someone getting it 3 times a month. And others I saw once a week, etc. Is this a full loading dose or one day’s worth? Or what should I ask for?

      I go back to the neuro tomorrow and want to be more prepared than I am. I feel like we are only brushing off the dust and it settles again before I get a chance to heal and if I had it more frequent, maybe it would stick. He mentioned Imuran and Cellcept last time and I don’t know what those will do to me (because I haven’t researched enough). Any comments would be helpful….Thanks!

    • March 4, 2008 at 1:06 pm

      Hi Gabrielle,
      The full life of a loading dose is 42 days. But that is the medicine itself, not including the rate at which your body uses it. Kevin realistically could go at least 3 months before we see a symptom, so realistically, his demylienation course does not neccesitate ivig frequently. Our doc however feels flooding the body with antibodies gives the best chance for the auto antibodies to be out produced by these good antibodies. Anyway, it seems as though you obviously need the once a week treatment plan.

      I have read many abstracts that contradict each other, some say the amount of ivig is not as relavant as the frequency, others say both are relavant. I was pushing for the maint. protocol, 1g/kg bi weekly, but ended up with 2g/kg month because of the whole flooding theory.
      Obviously ivig treatment schedules need serious tweaking before you find one that fits. I say the less damage the better, the better you physically feel, the better the quality of life. Sooo. why not start out 2g/kg once a week for 3-6 months, then 2g/kg bi-weekly 3-6 months, ultimateley getting the greatest spanse in between.

      We were told that once you feel symptoms, a demylienation process has already started, you want to avoid that, so we were told to stay at ground zero, no symptoms.

      The obvious options besides large amounts of ivig would be ivig/steroids, pp/ivig, cell cept, immuron etc. The choices all have their drawbacks, but it would depend on what works best for you.
      Regarding how long you can be on it, and how much, I guess to me it seems the safest, as long as blood work is done regularly to monitor kidneys and what not. Adjust accordingly I guess. Kevin has no other options at this point, so we are just going month by month blood test to blood test, happy day to happy day. We have no other choice.
      Good luck!

    • Anonymous
      March 4, 2008 at 4:51 pm

      So if I am doing 2 gm/kg now per month you are saying you can get that amount every week? I wouldn’t mind if it was safe, but jeepers, that’s a lot of time getting infused….

      Do others on here get that much weekly or biweekly?

      Hey and congrats on Make A Wish, they are a fantastic organization! I wonder if they would grant me a wish:)))

    • Anonymous
      March 4, 2008 at 5:13 pm

      I’ve researched the heck out of this topic. There isn’t any concrete answer. It pretty much comes down to what is best for the patient & what the dr is willing to do.

      This is basically Emily’s IVIG history…

      After Emily had her 1st relapse she needed IVIG 2-3 times a week at 2g per kg. She was 30 something pounds at the time & got 20 grams of IVIG each infusion. After 2 consecutive months (3 months into figuring her relapses out) of 20 grams of IVIG 2 times a week for 4 weeks & then 20 grams of IVIG 3 times a week for 2 weeks (apx 200 grams in 1 month), she was finally able to go 12 days without a relapse.

      We changed neurologists & Emily was pretty much taken off of IVIG & put on steroids. The steroids made her worse & she ended up relapsing after 9 days post IVIG infusion.

      We switched back to our original neurologist & Emily (now 50 lbs) was put on 20 grams of IVIG every 7 days. We did this for about 4 months then spaced her out to 10 days & then eventually every 14 days – which is where she’s at now. After cold & flu season is over we’re going to try to go 3 weeks. Emily has been relapse free for 1 year now (KNOCK ON WOOD!) with this treatment plan. We’re hoping that by September of this year that she’ll be able to go 1 month between infusions.

      I completely understand your frustration. For a full year after Emily’s original diagnosis I felt like we were taking 1 step forward & 2 steps back. It was a constant uphill battle. It seemed like every time we were getting somewhere with her not relapsing, something would happen & she was going downhill again. It is SO extremely frustrating!

      From my experience with Emily, I would recommend getting another loading dose of 2 grams per kg & then asking to be put on a maintenance dose of 2 grams per kg once a week. You’ll need the loading dose to build up IGG levels. If your dr is concerned about the possible side effects, which I’m SURE will be brought up, ask him/her to run routine blood work. If you became at risk for the side effects it should show up on your blood work before it becomes serious. If the dr is still resistant to that then ask if he/she would approve of getting 1 gram per kg once a week. Let the dr know that it won’t be a permanent solution but you would like to try it for a few months & that a slow weaning process may be better for you. The longer you can hold off a relapse the better chance your body has of healing. Every time you relapse the damage gets worse & it gets harder to get back to where you were.

      Good luck,

    • March 4, 2008 at 5:48 pm

      If you don’t feel comfortable starting at the week schedule, I guess you could go backwards and say try a loading dose every three weeks, if that fails, two weeks. I really did not articulate myself correctly and cannot think how to put on paper what I read, so I will try again, bare with me.

      Some abstracts stress the importance of frequency more than the dose itself. For example once a week maint (1g/kg, one abstract went as low as.5/kg) are more beneficial than a monthly loading dose, the thought being to constantly keep some measure of ivig in the system. If you were to get it monthly, whatever the dose, you obviously are not able to get the full 42 day life cycle based on your return of symptoms. So you are without any ivig for some time and another relapse occurs.

      I have some of these abstracts, if you have a fax, I can send them to you.
      As well, other abstracts support flooding the system! SO CONFUSING. This is what I chose for Kevin first of all because the doc recommended it,after reading the 17 pages I sent to him and I trust him, plus Kevin does not need it as often based on his course of relapse time. I guess the only way is to start experimenting.

    • Anonymous
      March 4, 2008 at 9:07 pm

      Gosh, thank you both for your replies, and on short notice! I will talk to the neuro tomorrow. He is pretty good to talk with, but was concerned with insurance company issues, etc. which now that I have it worked out, should not be a problem. I can’t even type a complete sentence here without mistakes!!!! Thank you both again, and I’ll check back to see if anyone else has comments! Dawn, I will pm my fax number too if you get a chance to send what you have…you are wonderful for offering! Gabrielle

    • Anonymous
      March 6, 2008 at 4:52 am

      Hi there Gabrielle,
      I definately sounds like youd benefit fro more regular ivig (? plus other meds also – depending on your med history etc) I was diagnoised last June and have always been pretty dependant on the ivig. Am on combination therapy but despite this require ivig 2 times a week. I get 2kg/kg every mon and fri.tried for six weeks on just once a week treatments of ivig but it didnt hold me at all. Just hought would let you know. luckily in New Zealand we dont have any funding or insurance issues for ivig.
      all the best and heres to more frequent ivig and getting some of your life back!!!!
      take care

    • Anonymous
      March 6, 2008 at 11:06 am

      Hi guys, Thanks Kiwi Chick! I went to the neuro yesterday and we are going to do every two weeks starting today. I’m waiting for my home care nurse right now. We also added Cellcept but I guess that takes a while to show any affect. My neuro is great and I told him what you all had said about more frequent dosing, but he had already suggested it. At least everyone is still on the same page. I told him I was superwoman for a week and then a mess. So the minute this kicks in, I am to head to his office to show him my walk as proof:)) I’ll let you know how it goes, and thank you all again….