IVIG/SCIG

I was on IVIG for 6m, and then 3m again. It mainly helps w/ neuropathy and dysautonomia, but may be useful fo some other symptoms.

I had to stop because I developed serum sickness to IVIG, twice. I wouldnt worry about this, its a rare side effect. I just started SCIG last week, as this could potentially circumvent the serum sickness.

As far as effectiveness...I've seen some people w/ neuropathy call it a miracle. I.e. within the first month, they felt markedly better. For me, it was a gradual process. It can sometimes take up to 2y to work, depending on how amped up the system is. It's kind of a war of attrition, the disese spikes, then calms down, then spikes again, but the IVIG should eventually wear it down. By the 6m mark I was starting to notice my vibrations and burning seemed a bit less...and then I had to stop. I know solaris tried it with no response on his dysautonomia, and I've seen others say this as well...at the same time, I've seen plenty of people who are hooked on their IVIG, and cant function without it. Each immune system is different.

The way it works is multiple. From a technical standpoint, the Fc receptor of the endogenous immunoglobulin binds to the Fc receptor on the antibodies youre producing. The fc receptor is like the lock that an antigen fits into, like a lock into a key, to kick start the immune response. By fc-fc receptor binding, youre neutralizing your own (bad) antibodies, and at the same time providing yourself more antibodies for protection. It's the only treatment that is both immunosuppressive and immunosupportive at the same time, which is why its a little miracle treatment. I think the reason the body allows this Fc-Fc binding is because its a way of shunting too many IgGs...kinda like your body says oh wow, look, I've got plenty of IgG, lets stop making my own. In addition, its theorized to work to calm the complement pathway and the cytokines it gives off, as well as the terminal membrane attack complex.

I'm hoping that by this point, there are plenty of Covid antibodies to multiple strains in my SCIG

Post Edited (dcd2103) : 12/1/2021 9:24:51 AM (GMT-7)

So you have low IgG? Have they diagnosed you w/ CVID? CVID often goes along w/ auto-inflammatory conditions, it seems to trigger them. Something about CVID that makes the innate immune system inherently unstable, which is odd because its a disease of the acquired immune system. IVIG should be helpful in this situation.

I've seen people w/ MCAS say that IVIG flared them innitially, but other than that most people just report headaches initially w/ ivig, which you wont get w/ SCIG. I havent really heard of anyone developing a new condition.

It really is quite a decent treatment. I am VERY sensitive to many supplements and treatments, yet I handled IVIG w/ next to no side effects, except for the serum sickness, which is a thing in itself. Basically if your complement system is activated/being used up, your body wont have the complement to break down the immune complexes (Fc-Fc bonds in this case), and they will deposit in the joints and cause inflammation. This is a very very specific response that has nothing to do with the sensitivity you are talking about.

I think that you would be ok, and if you arent then you can stop.

Post Edited (dcd2103) : 12/1/2021 10:22:34 AM (GMT-7)

Thats not low enough to be considered CVID.

So I think it's important to specify what type of sensitivies we are talking about. I am VERY sensitive to certain supplements. Anything that kills anything or causes any kind of biotoxin release, and my neuropathy flares like crazy. I also tend not to do well w/ high sugar, inflammatory diets. But it's not MCAS, there's no histamine release. It's an antigenic response, probably IgG.

Normally you'd take a benadryl (for any potential anaphylactic/allergic reaction) and a tylenol for any kind of inflammatory response. I got headaches w IVIG the first 2 times, after that they went away. They suck, but are completely tolerable and unavoidable. W/ SCIG, these tend not to happen as its absorbed over the course of 3-5 days.

I've seen drs use IVIG for mast cell. I do not understand the pathway w/ which it works to calm mast cell, and I dont think anyone really knows, but i guess for some reason it does. But i've also seen people who claim to have mast cell reactions to it intially. But I guess youre goin to get those anyway if you have mast cell, might as well try a treatment that could potentially mitigate them?

It's a breeze. Did my second infusion yesterday, takes like 1hr instead of 6hrs, and you can do it yourself. Havent noticed any side effects at all, knock on wood

Although SCIG is not quite as bioavailable as IVIG, and IVIG is stronger for that reason.

I did notice, however, when I did it in my thigh i seem to have absorbed it very quickly, vs when i did it in my stomach last week. So may try to keep doing legs to increase bioavailability

I think you’re better starting off with IVIG if possible. Most people start w that and move to scig once they’re stabilized

I dunno if scig has as dramatic effect initially, you’re more waiting for it to kick in slowly. I’m expecting 6-9m to assess if it’s truly working.

Also, did you have headaches as a symptom before trying ivig?