Cost of IVIG

JaimeS

Senior Member
Messages
3,405
Likes
12,205
Location
Silicon Valley, CA
So what is our treatment protocol? You say the "ideal member is someone ill and not been taken care of". Lots of us see the Drs, they just are not much, if any help!
None, for M.E. -- but many of us have co-diagnoses that do have treatment protocols, like IgG infusion for CVID, or medication for OI, or antibiotics for recurrent infections.

I don't see a path towards more socialized medicine as good for US. Just look at our friends in Canada and the UK. I don't hear them saying how great the care is, right?
I'm not arguing that it's good for America or isn't, as a whole. I was offering up my understanding of how the program works. As I said, I really doubt insurance companies will be agile enough to turn a profit by changing their whole outlook on how insurance is 'supposed' to work. If they did, however, it could end up being good news for people with chronic, treatable illness.

So are you saying that the Insurance companies cannot make money off our office visits if we do not have an ICD code? That doesn't seem logical.
That's not quite the case... the insurance company still makes money off of us because it collects its monthly check, whether we use medical services or not. However, how big a piece of the corporate pie they get depends on 'how sick' their members are, which is identified solely through diagnosis codes. Additionally, there are very specific mandates on how that money is used; depending on the size of the company, 80-85% of revenue must go to patient care or education.

Perhaps you can start a thread on this, or maybe not
I'm not interested in discussing the political ramifications, which I suspect is what will result. My post was meant to be informative rather than 'vexatious'. In fact, this is already off-topic regarding IgG treatment, so I'll end it here.

-J
 

Daffodil

Senior Member
Messages
5,314
Likes
5,306
countries with socialized medicine buy immunoglobulin in bulk so are able to pay less for it. also, the price fluctuates quite a bit depending on demand at the time.

apparently, you get 35% less absorption via the subQ route
 

Gingergrrl

Senior Member
Messages
13,255
Likes
38,559
I was approved for three infusions of IVIG and my first is next week. I honestly have no idea what my insurance will be billed or what my share of cost will be and am sure I am in for a very rude awakening. We are starting at a much lower dose than was approved for safety to see how I tolerate it and I assume that the remainder is just wasted vs. the insurance letting me use the approved total toward future infusions.

My doctor is going to make a case based on my medical history that I would not be able to tolerate starting anywhere close to the autoimmune dose and we need to start very slow and build it up. My insurance has already stated that if we ask for anything beyond the three infusions that they expect me to do "x,y and z" (switch from hospital infusion center to home health, add an immunosuppressant or other treatment, etc) but clinically with MCAS, I am not safe to do it at home b/c each batch is different and you could be allergic or get anaphylaxis to your 5th dose (or any dose) since each one has different IgG donors.

If we do add an immunosuppressant, etc, in the future it will be b/c my doctors feel it is the right clinical choice and the right timing vs. insurance trying to find a cheaper option. But for now am thrilled that I was approved for three infusions b/c was honestly not expecting to be approved at all and it has taken me five months to get to this point.

ETA: I spoke to one person (not someone from PR) whose insurance denied it after the infusion and they were billed 45K! And prior to that, their share of cost was $9K per infusion. I have an auth in writing that I am approved for three infusions so I know this cannot happen to me but I expect my share of cost to be high. Am hoping by three infusions that it is enough to know if it is helping me and if it is, I will fight to the death to get more.
 

Gingergrrl

Senior Member
Messages
13,255
Likes
38,559
@Gingergrrl you might also consider subQ as it is cheaper...maybe more likely to be approved?
My ME/CFS doctor, Mast Cell doctor, and Neuro all want me to try the autoimmune dose which cannot be reached (or even close to it) with SCIG. SCIG from my understanding is for immune deficiency dosing which is lower. Whether I will tolerate that high of a dose remains to be seen and I started at 24 grams which is less than half of the AI dose for my weight. But I want to give it my best effort as long as it is done as safely as possible.
 

Daffodil

Senior Member
Messages
5,314
Likes
5,306
My ME/CFS doctor, Mast Cell doctor, and Neuro all want me to try the autoimmune dose which cannot be reached (or even close to it) with SCIG. SCIG from my understanding is for immune deficiency dosing which is lower. Whether I will tolerate that high of a dose remains to be seen and I started at 24 grams which is less than half of the AI dose for my weight. But I want to give it my best effort as long as it is done as safely as possible.
24 g seems pretty high...i am surprised thats half the AI dose!
 

Gingergrrl

Senior Member
Messages
13,255
Likes
38,559
24 g seems pretty high...i am surprised thats half the AI dose!
The IVIG dosing is different than the SCIG dosing so I can see why it must sound very high. The 24 grams that I did is considered a solid immune deficiency dose but for me to have a true autoimmune dose for my weight, it would need to be in the mid 50's range. However, I often respond to smaller doses of everything than the average person so I may not really need to go that high.

My next dose in approx three weeks will be 36 grams and we'll see how I tolerate it. It will also be at a slower speed than my first dose was. Am having some normal side effects that I expect to dissipate within the next few days but nothing of great concern.

ETA: Good luck whatever you decide re: SCIG or IVIG and hope it works out how you want it.
 

Daffodil

Senior Member
Messages
5,314
Likes
5,306
The IVIG dosing is different than the SCIG dosing so I can see why it must sound very high. The 24 grams that I did is considered a solid immune deficiency dose but for me to have a true autoimmune dose for my weight, it would need to be in the mid 50's range. However, I often respond to smaller doses of everything than the average person so I may not really need to go that high.

My next dose in approx three weeks will be 36 grams and we'll see how I tolerate it. It will also be at a slower speed than my first dose was. Am having some normal side effects that I expect to dissipate within the next few days but nothing of great concern.

ETA: Good luck whatever you decide re: SCIG or IVIG and hope it works out how you want it.
yea ur right..it is diff...oops. when i did it, i still only took 10 g so now i realize i probably only got like 6 in my body!
 

Gingergrrl

Senior Member
Messages
13,255
Likes
38,559
@Daffodil I can't find where you said this, and it might be in another thread, but did you say that there was a shortage on Gamunex? Sorry if I am confusing this and it was not you who said it!
 

Daffodil

Senior Member
Messages
5,314
Likes
5,306
@Daffodil I can't find where you said this, and it might be in another thread, but did you say that there was a shortage on Gamunex? Sorry if I am confusing this and it was not you who said it!
yes....it was the people at one of the Kabafusion locations that said this....but other companies seemed to not have a problem selling it to me...so maybe it was just their supply or something..not sure.
 

Gingergrrl

Senior Member
Messages
13,255
Likes
38,559
yes....it was the people at one of the Kabafusion locations that said this....but other companies seemed to not have a problem selling it to me...so maybe it was just their supply or something..not sure.
So you are able to purchase IVIG (or SCIG) on your own vs. an infusion center or home health agency getting the product through your doctor's order?

This is still brand new for me and am very curious to learn all of the info! In my case I will only be doing it at an infusion center b/c of safety reasons with my MCAS but am fascinated to learn all of the options for future reference (when you have time to explain and no rush!)
 

Daffodil

Senior Member
Messages
5,314
Likes
5,306
@Gingergrrl yes, you can just buy it in the states and some parts of Europe as long as you have an Rx. in the states, you can get it at a specialty pharmacy (or they can ship it to your house). some countries, such as Canada, Portugal, France, Ireland, etc....do not allow that and you must get it infused through a hospital or infusion clinic [i know this because i called them all lol]

In the countries where you cannot just simply buy it from a pharmacy, and want to take it home and do it subQ, i am not exactly sure how it works.

In Canada, they do not ever Rx immunoglobulin for home subQ injection (at least not in my province)...and no one here will let me have it infused for CFS at a hospital (socialzed medicine) ....so i cannot even get it in my own country!

I do intend to beg my local doctor soon, to let my buy it if nothing else...but I know he will say no. here, its tightly regulated through Canadian Blood Services.

Its not hard to do at all, at home. i just bought a cheapo pump from ebay...and had some specialty pharmacy in the states send me the supplies
 
Last edited:

Gingergrrl

Senior Member
Messages
13,255
Likes
38,559
@Gingergrrl yes, you can just buy it in the states and some parts of Europe as long as you have an Rx
Thank you, that is interesting and I had no idea you could just buy it if you have a prescription. I won't be doing this but it is good to know. I assume you need both a prescription AND approval from your insurance (unless you were super wealthy LOL.)

I do intend to beg my local doctor soon, to let my buy it if nothing else...but I know he will say no. here, its tightly regulated through Canadian Blood Services.
Am curious, what benefits did you get from the IVIG (or SCIG?) You seem very motivated to obtain it so it must have been very beneficial and am curious what you noticed. Sorry if this is all in another thread and I am missing it!
 

Gingergrrl

Senior Member
Messages
13,255
Likes
38,559
@Gingergrrl actually, I do not know if I had any benefit from it but I just want to do what my doc thinks is best cuz I think he knows what he is talking about

xo
Thanks and was just curious. For the last 24 hours I've felt a definite improvement that is noticeable to others but feel it is impossible to attribute to one dose of IVIG so am waiting to see how I do over next 2-3 wks until next dose.
 

Daffodil

Senior Member
Messages
5,314
Likes
5,306
Thanks and was just curious. For the last 24 hours I've felt a definite improvement that is noticeable to others but feel it is impossible to attribute to one dose of IVIG so am waiting to see how I do over next 2-3 wks until next dose.
that is good. i know it must help...it seems to help every disease lol
 

justy

Donate Advocate Demonstrate
Messages
5,524
Likes
12,229
Location
U.K
i still only took 10 g so now i realize i probably only got like 6 in my body!
I don't think this is correct. I have read studies (not sure where they are right now) that say that SCIG is absorbed giving the same dose as IVIG - in fact patients are often more stable on SCIG because more frequent dosing stops the peaks and troughs you get from IVIG.

I assume you need both a prescription AND approval from your insurance (unless you were super wealthy LOL.)
I don't know about in other countries, but for Daff and me we have the RX from a private Dr which means we pay all the costs of our medical care and prescriptions - we cant use insurance. I pay 80 euros a vial for my GG in Europe, three months supply costs me 600 euros - BUT I only take low dose.

For the last 24 hours I've felt a definite improvement that is noticeable to others
WHOOP WHOOP! Can you say in what way it has helped? Low dose GG helps me to be able to potter around at home, do some light cooking and cleaning and go out with help. Without it I am almost bedbound. My Dr has no idea why this is...
 

Daffodil

Senior Member
Messages
5,314
Likes
5,306
@justy I also read that once...but then talked to a couple of people who showed me some newer research.....and when i called to ask gammunex cost....the pharmacist i spoke to happened to have been involved in the research. he says they make the gammunex up differently for someone doing subQ...

i am having trouble finding the paper right now....but it showed that its 37.5% less absorbed by subQ....i will try to find it
 

Gingergrrl

Senior Member
Messages
13,255
Likes
38,559
I don't think this is correct. I have read studies (not sure where they are right now) that say that SCIG is absorbed giving the same dose as IVIG - in fact patients are often more stable on SCIG because more frequent dosing stops the peaks and troughs you get from IVIG.
I honestly do not know any details on this and do not want to misspeak! All I do know is that both of my doctors said that I could never reach the autoimmune dose with SubQ version b/c it is a much lower dose. You can go much higher with IVIG vs. SCIG and can do it in divided doses over the course of several days (if I really ever get that high dose, no idea if I will tolerate it.) As far as how much is absorbed though, I have no idea.

I don't know about in other countries, but for Daff and me we have the RX from a private Dr which means we pay all the costs of our medical care and prescriptions - we cant use insurance. I pay 80 euros a vial for my GG in Europe, three months supply costs me 600 euros - BUT I only take low dose.
Am not sure how to compare but here if IVIG is not approved by insurance, it is not do-able for the average person unless they are a millionaire LOL. IVIG is called liquid gold here and even with insurance I will be paying a lot but without it, it would be impossible.

WHOOP WHOOP! Can you say in what way it has helped? Low dose GG helps me to be able to potter around at home, do some light cooking and cleaning and go out with help. Without it I am almost bedbound. My Dr has no idea why this is...
Whether it has truly helped from one dose, I am quite uncertain but will tell you my experience. It has raised my blood pressure and maintained the increase for 5-6 days without having to take any Midodrine. My BP last night was around 110/75 and staying in this basic range (systolic 100-110 and diastolic 70-78) on it's own and prior I'd drop to the 80's 50's without Midodrine. I have more muscle strength and energy to do basic tasks, especially in my arms which are normally very weak, such as opening the shower door, lifting lightweight objects, or changing the toilet paper roll on my own- very basic tasks, but stuff I could not do prior to IVIG.

It is also easier for me to transfer from wheelchair to bed/chair completely on my own, etc, or to briefly stand up to get dressed without becoming completely breathless. I have more energy to go out and do errands (in wheelchair) for several days in a row. I could do this before if needed but it was more challenging. And without being graphic and hoping this is appropriate, it is no longer difficult (b/c of breathing issues, muscle weakness or pain) to be intimate with my husband and like being on a second honeymoon LOL (I'm sure this would be a great advert for IVIG LOL... if truly related, I have no idea) and hope I am not embarrassing myself or anyone by typing this. Really debated typing this part but since Justy asked, I decided I wanted to be honest.

Also am not having any allergic reactions in spite of a horrific fire not far from us and very bad air quality and heatwave. Am tolerating more foods and not as scared to try them or worried about anaphylactic reactions. But this waxes and wanes and also cannot be certain is from the IVIG.

The bad part of IVIG is that it makes me feel (off and on) slight pressure in my head and bloating in my stomach similar to third spacing from MCAS. The first few days I felt a drugged type of tired and had to sleep a lot and my fingers were swollen so my rings did not fit and gained like five lbs overnight but now my fingers are back to normal and the five lbs basically gone. I guess you retain a lot of fluid with IVIG in the first week and then it dissipates. It also makes me very thirsty and I normally do not feel thirst or drink water and now I am drinking like 7-8 cups a day so overall, I think that is a positive, too.

Thanks Andy and I love balloons LOL. Glad you are feeling better too and off the bench.