Anyone else get IVIG only occassionally?

Hi Deem,
Well, funny you should ask about this. We wonder about the same thing all of the time. First, I was wondering, are you currently on the imuron and steroids? I guess you could assume (if you are still on the imuran and steroids) those drugs are helping to hold you and the ivig is a little extra if you will. Those two drugs supress the immune system and ivig is thought to flood the body with antibodies, so they both do different things. I guess if you are on the other drugs, you would notice stability without the ivig. (just my thinking) So I guess if you are doing well while on the other drugs, I would give the every four months a try. Technically, anything past 42 days is going without ivig since it only has a maximum life of 42 days. If you ARE NOT on anything else, I might be hesitant. Once you notice a symptom, the process has already started long before you felt the symptom. Any progress that you made in healing (mm a day = to 14.37 inches a year) gets wiped out and you start from scratch, not to mention the fact that you may not get back what you have lost again. Kevin currently is on loading dose once a month. From past relapses, I would say that he could go 4 1/2-5 months with no symptoms and then the six month it starts. So we are trying to flood Kevin’s body with ivig (good antibodies) in the hope that his immune system will reboot, or re-recognize the right way to get rid of the auto antibodies eventually. We went to an immunologist independently of our neuro just to make sure that another doc felt the same way, and he was in agreement, he actually felt that we should continue the loading dose for a year as opposed to our neuros plan of 8 months. then we will up it by two weeks for a year at a time. So six weeks for a year will start in November. Our goal is to get the immune system to work correctly in 3-5 years spacing it out each year.
In short, if you ARE on the other drugs, maybe you could try the loading doses every 4 months, if you are “NOT, I might reconsider if it were me. Good luck and I am so happy you are doing so well, it is most encouraging!
Dawn Kevies mom

[QUOTE=deem]Hi all, it’s been a while since I posted on here. I’ve had CIDP since October last year. Started Prednisone in December and IVIG in January. Added Imuran in March. I’ve had very good results and feel pretty symptom free these days. I had the 5-day loading dose of IVIG in January and then a monthly treatment in Feb, Mar, and April. When I saw my neuro at the end of April, he said I was doing so well, he wanted to try and space the IVIG out to every other month. I would have been scheduled to have it this week, however, I spoke with him last week and asked if I could hold off on the treatment if I still wasn’t showing any sign of the CIDP returning. He then said I could try it only 3 times a year, which would mean every 4 months. Obviously, if I see a return of symptoms, I will call and have it scheduled sooner. I am tickled to be able to skip some of the treatments, just wondering if anyone else is on a really spaced out IVIG schedule? Thanks![/QUOTE]
We had a discussion about lowering the IVIG dosage with my husband’s neurologist recently as he too is doing quite well. It seems that keeping a certain level of IVIG in the system is important so many neurologist choose to not change the frequency, but to lower the dose and monitor for what dose maintains the patient symptom free. That rationale seems more sensible to me than changing the frequency to 3 times a year. His neurologist said that many people can be maintained on 0.4 G per kilogram of patient weight every 4 weeks, but there are a few out there that can be maintained on 0.2 G per kilogram of weight every 4 weeks. I have read several articles that support lowering the dose versus lowering the frequency. You might want to discuss that point of view with your neurologist.
Laurel

Deem,
Regarding Kevin. It appears as though Kevin goes into remission and then relapses, about every 4-5 months. Keeping him on ivig even during the time he is healthy never allows him to relapse and then he continually heals. Additionally, it hopefully is building up antibodies to over power the auto antibodies for the day that we do quit ivig, or at least get them really spaced out. As Laurel mentioned, and your nurse, ivig is spaced out by 1-2 week intervals when changing the plan. That is how we are doing Kevin. At one year of every 4 weeks, we will move to 6 weeks.

Maybe your doc feel that BECAUSE you are on imuron AND steroids, you are pretty well protected and the ivig is just a little extra. In your case (my uneducated mom opinion) the other meds work to supress your immune system, stopping the attack, and the addition of ivig helps w/the antibody production, or the flooding it.
A while back I had sent some abstracts to Laurel ( I think it was her) and they support decreasing the ivig, and that the frequency is more important than the dose, basically it is more important to maintain some amount of antibodies in the body. Since it only lasts 42 days, anything after would mean your body is working on its own production. Everybody is different on how much they produce or use up if you will. Perhaps Kevin’s remission happens at about four months because that is when HIS body begins producing more auto antibodies than antibodies. It is so confusing. As I mentioned, I can only surmise that your doc is spacing it out so far because you are on the other drugs. If you felt safer and did not want to loose your gains, perhaps you could do every 6 weeks for 6-8 months and then go to 8 weeks for another 6-8 months and then you might be able to better monitor any differences. Good luck!
Dawn Kevies mom