What is the optimal dose/autoimmune dose of IVIG?

[ChookityPop]

What dose did you get?

 

[gbells]

I don't think IVIG works for ME due to chronic viruses because of all the checkpoints that are blocking apoptosis. The point of IVIG is to trigger apoptosis but it can't. I think doctors have abandoned it.

 

[jaybee00]

IVIG won’t cure MECFS

 

[Markus83]

IVIG won’t cure MECFS

There are older studies, some of them show a benefit for high-dose IVIG. But they used Fukuda criteria for CFS diagnosis which are not as specific as canadian criteria.

 

[Badpack]

@ChookityPop

The dose that cured some ppl i know with Cfs was 2g/kg initial dose, followed by 1g/kg maintenance dose.

Dont know if you can speak german, but here is Dr. Stingl from Austria. He treated a lot of Cfs Patients. And he said the only 2 things that helped a lot of Cfs ppl in his doctors office are Ivig and Mestinon.

 

[ChookityPop]

@ChookityPop

The dose that cured some ppl i know with Cfs was 2g/kg initial dose, followed by 1g/kg maintenance dose.

Dont know if you can speak german, but here is Dr. Stingl from Austria. He treated a lot of Cfs Patients. And he said the only 2 things that helped a lot of Cfs ppl in his doctors office are Ivig and Mestinon.

Awesome, I will check that out! thanks

 

[ChookityPop]

@ChookityPop

The dose that cured some ppl i know with Cfs was 2g/kg initial dose, followed by 1g/kg maintenance dose.

So the first dose with 2g/kg and then 1g/kg afterwards? Great info!

 

[Martin aka paused||M.E.]

The question is who pays for it

 

[leokitten]

If insurance doesn’t pay for it it’s extremely expensive like $150k+ for course of treatment?

 

[Martin aka paused||M.E.]

An

If insurance doesn’t pay for it it’s extremely expensive like $150k+ for course of treatment?

yes and my insurance doesn’t pay for anything

 

[leokitten]

An
yes and my insurance doesn’t pay for anything

Maybe it’s a lot less in Europe but still I doubt it’s that affordable, especially weighing the cost-benefit and the chances that IVIG will help are really small.

 

[leokitten]

An
yes and my insurance doesn’t pay for anything

Maybe in Europe it’s only a couple thousand euros per infusion, not sure how many infusions would be needed to determine efficacy, probably worth asking your doctor if it is much cheaper than in the US.

 

[ChookityPop]

.

 

[Badpack]

If you dont weigh around 5kg i guess your math is wrong. Because the content of immunoglobulins in a Panzyga infusion is 10%. So it would probably cost you 12110€ followed by 5790€.

 

[ChookityPop]

If you dont weigh around 5kg i guess your math is wrong. Because the content of immunoglobulins in a Panzyga infusion is 10%. So it would probably cost you 12110€ followed by 5790€.

Well, that sucks.

 

[mitoMAN]

IVIG won’t cure MECFS

I love your comments ❤️

 

[ChookityPop]

IVIG won’t cure MECFS

But it could potentially increase quality of life to some extent right?

 

[GlassHouse]

I get 35 grams per week. I’m 5’8” 145 lbs. I get the subcutaneous version (Cuvitru). It’s made a noticeable difference in my POTS but took around 5 months to notice the benefit (my standing heart rate is now around 90-100 instead of 150-200). I realized that something had changed when I wasn’t reaching for my Propranolol most days.

My insurance covers this but we fought with them continuously for 2 years and then ended up filing a complaint with the Department of Managed Healthcare.

 

[ChookityPop]

I get 35 grams per week. I’m 5’8” 145 lbs. I get the subcutaneous version (Cuvitru). It’s made a noticeable difference in my POTS but took around 5 months to notice the benefit (my standing heart rate is now around 90-100 instead of 150-200). I realized that something had changed when I wasn’t reaching for my Propranolol most days.

My insurance covers this but we fought with them continuously for 2 years and then ended up filing a complaint with the Department of Managed Healthcare.

Thats great! Do/did you have issues with blood pooling in the legs etc prior to starting the IVIG?

 

[GlassHouse]

Thats great! Do/did you have issues with blood pooling in the legs etc prior to starting the IVIG?

I do think it has been helping with blood pooling in my legs. They feel less heavy/ achy. I’m planning to do another lean test to compare to my previous results. During my last lean test my hands and feet turned purple and swollen and the rest of my body was a mix of red and white blotches, and I got progressive electric shocks in my hands and feet (starts out like tiny pin pricks and progresses to huge jolts of electricity that makes my body jerk and I have to stop the test). The lean test is the only time I’d stand upright and stay still. I’ve had POTS since I was 12 (I’m 30 now, and got ME/CFS at 21) so I’m used to always moving my legs to prevent blood pooling.