Cost of IVIG

Santino

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My ANA is mostly between 1:200 (mildest positive here is 1:160) and the highest was 1:1000. The latter was outside a flare and I did only one measurement in a flare where I reacted to a food. I have Alopecia Areata and Vitiligo. I have always high Creatininine (1.6) but my rentals work fine according to cystitis C. As far as lab marker, they are mostly normal. I am that guy who has lots of weird reactions but no high histamine in blood, not a low DAO and no high tryptase (but in a flare you can clearly see that tryptase increases by 4 fold (but remains in the normal range).

So not really much info from the lab. It would be helpful if I had data, experiences or even statistics from doctors who regularly use IVIG with their patients. Do you know if your doc treated many MCAS patients with IVIG?
 

Gingergrrl

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@Santino Your ANA titers seem high but also fluctuate a lot. Do they think it is high from your Autoimmune skin conditions?

I do not know of any statistics re: using high dose IVIG for MCAS. My own MCAS doctor uses it on a lot of his patients and reports good results but I don't know how many or details.

I started IVIG to try to reduce or replace pathogenic autoantibodies and if this led to symptom improvement (which it did), then I was going to try Rituximab (which I am doing now and my 4th infusion on Feb 2nd).

I did not expect the IVIG to put my MCAS into remission (vs. to improve other symptoms) and this was an extra bonus. I cannot explain the mechanism but assume it modulated my immune system away from the insane allergic reactions.
 

JeanneD

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I'm puzzled by, or perhaps a better phrase is 'curious about' the difference between my experience with IVIG and that most commonly described here.

First, I only get one pre-med, Benadryl. Second, I don't get anything like the bad side effects I'm hearing about here. Most days I come home feeling tired and "off" with maybe a bit of dysautonomia problems, but that may in part be the Benadryl. I sleep a few hours and it's usually quite a bit better and by the next day I'm usually fine.

That's with the Octagam. With the Gamunex my side effects were more significant -- mild headache, dizziness, mild nausea, and exhaustion, but only bad enough to add Tylenol as a pre-med. I wasn't great the next day, but not miserable. None of this is anywhere near the side effects some of you have.

Is this because I'm getting the CVID dose, rather than the higher autoimmunity dose? Is it only the people on the autoimmunity dose that need more pre-meds and have worse side effects?
 

Learner1

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I'd say you're lucky. Both my doctors think my side effects are due to it battling my autoimmunity. I also have MCAS and it seems to set it off. I started with Gammaked, and had significant side effects, but they've been much better with Gammunex-C as long as I take Solumedrol, naproxen, Benadryl, and my MCAS meds.
 

JeanneD

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I'd say you're lucky. Both my doctors think my side effects are due to it battling my autoimmunity. I also have MCAS and it seems to set it off. I started with Gammaked, and had significant side effects, but they've been much better with Gammunex-C as long as I take Solumedrol, naproxen, Benadryl, and my MCAS meds.
I don't think I have significant autoimmunity. I used to get a lot of very detailed immune testing and no one ever suggested autoimmunity. So that could be a factor.

Are you taking the CVID dose or the autoimmunity dose?

As you say, maybe I'm just lucky. :D
 

Markus83

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Is there anyone who traveled from the US to Europe for affordable IVIG?
Where in Europe shall IVIG be affordable? I'm from Germany and we have costs for ~ 1000 € per 10 g. I could reach France, Belgium, Austria, Switzerland, Poland if it would be cheaper there. So if you give me a hint, I can try it and tell you if it works.
 

Learner1

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The product itself is expensive, as it is a blood product from thousands of donors that must be collected, screened, purified, and bottled.

The price my insurance is paying in the US is about $1,000 per 10g, which includes 10 hours of a dedicated nurse's time, saline, and supplies. So, I'd guess the product itself is probably about $800 per 10g.
 

Markus83

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So, I'd guess the product itself is probably about $800 per 10g.
So it's pretty much the same as in Germany. Maybe in Eastern Europe it would be cheaper, but I don't know how strictly the production process is controlled there and after all we don't have an indefinite amount because, as you mentioned, it's made out of blood from donors. So I don't know if they would sell it to foreigners. At least what I've heard, it's not seen with pleasure if patients without immune defects use IVIG. Even if IVIG would work definitively for CFS, I don't think there would be enough IVIG to cover all patients.
 

FMMM1

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So it's pretty much the same as in Germany. Maybe in Eastern Europe it would be cheaper, but I don't know how strictly the production process is controlled there and after all we don't have an indefinite amount because, as you mentioned, it's made out of blood from donors. So I don't know if they would sell it to foreigners. At least what I've heard, it's not seen with pleasure if patients without immune defects use IVIG. Even if IVIG would work definitively for CFS, I don't think there would be enough IVIG to cover all patients.
Haven't read any of the above. However, (if I can recall correctly) Vicky Whittemore (NIH) said that we haven't identified the cause of ME/CFS [Invest in ME Conference June 2018]. Will a doctor prescribe IVIG for a disease of unknown cause?

I have a family member who's been treated with IVIG.

There appears to have been progress in terms of developing a biological diagnostic test e.g. Single Cell Raman Spectroscopy [https://pubs.rsc.org/en/content/articlelanding/2018/an/c8an01437j#!divAbstract]. Also, Ron Davis presented a range of other potential diagnostic tests at the Invest in ME Conference; I assume he'll go through these in a few weeks at the OMF Community Symposium.

Once we know the underlying problem, and have a diagnostic test for it, then we can look at existing treatments which could potentially work e.g. IVIG.

I've asked a Member of the European Parliament (MEP) to ask a parliament question on whether they will fund the development of a biological diagnostic test for ME/CFS; they've done this for Lyme Disease etc. Are you in the European Union and if so are you be interested in asking your MEP to ask for funding for the development of a biological diagnostic test? Here's a draft question if you/any other reader are interested [https://forums.phoenixrising.me/ind...dicine-fatigue-and-me-cfs.61368/#post-998461].

Good luck with the IVIG if you try it.