Does IVG work for ALS?

[Atsugi]

I'd like to hear the personal experiences of people on this forum as to whether or not they saw any material improvement in ALS due to IVIG.

Did IVIG improve your ALS?

 

[hn7609]

Did IVIG improve your ALS?

I got 8 quarts during the diagnosis process.................the result was possibly a small placebo effect for a week but overall it did nothing but lighten my wallet considerably.

 

[Vincent]

I just completed a week long round of IVIG. My neurologist noticed some improvement in my hand strength two weeks later. Now, he was examining me in a hospital bed I was in due to blood clots in my lungs, which were resultant of IVIG. Both neuros I've been to have been prescribing IVIG for 20 years plus and have never seen this before. Guess I'm just lucky. Though it's kind of unsettling to have doctors and nurses tell you how lucky you are to be alive.
Vincent

 

[zoohouse]

I am confused to why they gave you a "week long round of IVIG", as the treatment is given over 1 day, usually 6 hours to start with then sped up if tolerated. This is given every 4-6 weeks depending on when the improvement starts to diminish. If the unit is given over too long of a time frame it increases your chance of phlebitis. Would you be able to tell me the dose that they gave you each day? I thought it was bad that Tim's one treatment in Seattle was given over 24 hours, and even the company that supplies it said that it shouldn't have.
I want to make it clear that I do not believe that IVIG is a treatment for ALS, but is the treatment for MMN which mimics ALS very closely, and it seems that only very astute neurologist are able to tell the difference with an EMG. Tim's very initial EMG did show the marker, and at this time of night I can't remember exactly what that was, something like a break in the F wave. But this was never reproduced any other time. That and his positive Anti-GM1 made it a possibility that it was MMN, and indeed he did have some improvement with his strength, and reduced fasciculations, but after 6 month it decreased to no improvement at all. His insurance covered it all, but we felt that if it wasn't helping he should stop.

Paulette

 

[Vincent]

The norm in Canada is 5 days on 4 weeks off. Then repeat ad nauseum. Given my spectacular reaction I will not be getting IVIG again.
Vincent

 

[zoohouse]

I am a Canadian and I also infuse IVIG in our outpatients department, and that is not the procedure that we do. I suppose it depends on each facility, but I still believe that that is weird. After speaking with Tim, his first infusion was over 3 days, then 1 day (4-6hrs.) every 4 weeks. He did have his last 2 infusions here, over 4 hours.
Paulette

 

[SMP51]

Steve's IVIG treatment was a 5 day treatment then 3 week respite, then repeat.
he had 3 sessions, if I recall correctly, in hopes to help with possible CIDP..... results - NOTHING. (maybe very slight progression, maybe)
next he had an infusion of steroids, doctors were still hoping to knock CIDP into at least a little remission.
but, as we know now it was not CIDP, it was ALS and IVIG has no affect on ALS.
part of ALS diagnosis is the rulling out of other diseases.

so to answer your question....... a big fat NO

 

[JimInVA]

Our experience was very similar to what SMP51 describes. Darcey was originally diagnosed with CIDP and treated with IVIG for a year. In fact, they changed from 1-day/month to four consecutive days/month during the last 3 months of this treatment. When subsequently diagnosed with ALS, IVIG was halted. My understanding is that IVIG can be effective for autoimmune related disorders but not motor neuron related disorders.

Jim

 

[Jeffreyp]

Wife has completed 2 week long courses of IVIg-- we did not notice any benefit.

 

[adozi]

I had three days of IVIG before i was diagnosed. It was when we were hoping it was something else. It did not help.