booster IVIg (trying something new)
 

I had a five-day course of IVIg a few weeks ago. It made me strong for a week, and then all my symptoms flared up again.

While I was feeling the good effects of the IVIg, I thought it would make sense to try to keep me strong, instead of letting me crash before treating, so I asked my neuro to prescribe one infusion per month. My first monthly booster day is this Tuesday. I suppose I'll go, but now that all my symptoms are back, I don't really see how one day is going to do much for me, when the whole five-day course only gave me one week of strength. Any thoughts? Is it possible that if I have one day per month, it will start to bring me up after a few months?

It's hard for me to imagine doing the five-day course again. My MG doesn't give me vision or breathing problems, so I have the luxury of choice here. The five days at the infusion center (my insurance won't cover home infusions) were incredibly disruptive to my family, and exhausting to me, and I had migraines for a week afterwards. The week of strength I gained was not worth the week I lost.

Abby

Abby, I had a similar experience with IVIG back in JUne. But I am feeling very exhausted and my breathing is bad so I am giving it a try again. I think it was a shock to my system the first time. Hopefully I will do better. I think they are trying for this week too. I will let you know how it goes.


I am thinking of trying plasmaphoresis if this does not work. The exhaustion is getting to me. I do not know how I can keep working like this.


good luck
kathie

I am about to do another loading dose (1st loading dose in 2 years) this coming week (and dreading it)!!! But, I know for me my initial IVIG loading dose, 2 years ago, I thought I felt better, but then thought maybe it was placebo.. I had another just regular one day dose 3-4 weeks later and then that is when it really hit me that I got better.. it was all of the sudden and super obvious.. I almost felt like my old normal self!!! I hear that's not uncommon to feel better with the following infusions.. So, I think it's worth the try...
I despise losing times with my family and going to the infusion center as well.. and have spaced out infusions further just due to that, not to mention the ill effects for days afterwards.. but if it's only one day then at least that's easier than 5.. so I think it's worth it to try at least one or two times

Hi Abby,
I´m a strong advocate for PLEX for which the standard is five exchanges run on alternate days. Since PLEX is a filtering process, why is it repeated five times during about one and a half week, assuming that the filtering process is conducted in an efficent way?
Since it is a continuous process, one has to filter more than one time the volume of plasma present in the individual blood system in order to achieve a high filtering efficiency.
In France, they have selected to filter 1.5 times the volume of plasma.
In conclusion, I think it is better to repeat treatments (IVIg or PLEX) at some time intervals compatible with the patient situation rather than run blocks of repeated treatments.
In my situation, I´m particularly happy with one PLEX every 7 weeks.
Maurice.

Thanks! That gives me hope. So far, I haven't really responded to anything I've tried: Mestinon, azathioprine, IVIg or Prednisone (low-dose). I'm always hoping, of course, for that magic treatment... On the other hand, I have had several mini-remissions (two to three months) for no apparent reason.

Abby

Hi Abby - I've been on IVIG for about 8 years and have tried different combinations and timing over the 8 years. About 2 years ago, I was doing .4 gram/kg of my weight for 5 days each month. It would take about 4 hours per infusion (I'm not a small woman:( ), but I noticed that it didn't seem to be working as well as it had in the past. After talking to my neuro, we switched to 1 gm/kg twice a month. As he explained it, I was getting the same overall dosage monthly, but in a larger bolus dose each time. This has worked much better for me over the last 2 years.

So, I guess the moral of my story is that it isn't always just the number of times you have the IVIG, but also what the dose of grams per kilogram of weight us for you. My understanding is that .4 is the standard, but obviously, that can be adjusted.

Hope you find what works best for you!

Juanita

[QUOTE=Juanitad;1026894]Hi Abby - I've been on IVIG for about 8 years and have tried different combinations and timing over the 8 years. About 2 years ago, I was doing .4 gram/kg of my weight for 5 days each month. It would take about 4 hours per infusion (I'm not a small woman:( ), but I noticed that it didn't seem to be working as well as it had in the past. After talking to my neuro, we switched to 1 gm/kg twice a month. As he explained it, I was getting the same overall dosage monthly, but in a larger bolus dose each time. This has worked much better for me over the last 2 years.


What is the "standard" for loading doses? is it 1mg/kg or 2mg/kg over how every many days they choose? I get a little less tan 1mg/kg every 3 weeks and will be getting two of those in a row this week... seems like a lot!