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Gamma globulin

Rrrr

Senior Member
Messages
1,591
as we all know, we need 2 of our immune subclasses to be low in order to qualify for insurance to cover the gamma globulin. but two things to consider:

1) your IgG subclass numbers can change over time. so if you do not get the test results you want/need the first time, that could change later, over time (how much time, I have no idea).

2) i wonder if your results are not low with one lab, maybe it is still worth trying with another lab -- i.e. if you are from the U.S., it may be worth trying with both Quest and Labcorp labs (the two biggest labs in the U.S.) to see if you get the results you need for insurance coverage of the gamma globulin?

this below link is for the IgG subclass test with Quest Lab:
IgG subclasses (and you get a total with it at Quest).
http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7903

personally, i did the test with labcorp labs, not quest labs. and i just tried to find the same test at Labcorp. i think this is it, but the URL is very very long! It is LabCorp Test Number: 209601
https://www.labcorp.com/wps/portal/...!/?itemId=408155#7_UE4S1I930OGS20IS3O4N2N6680
 
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Rrrr

Senior Member
Messages
1,591
good news! i was better today!!!! able to go outl!!! so it took 8 days to get over the 1 gram shot i did. (well, i also did 1/3rd of a gram 5 days ago, too, thinking that could help. duh!!)

whew. it was really hell these past 8 days. really freaking hell! soooo sick. barely able to get out of bed. the strange thing was that i was at my sickest just yesterday. my eyes were all bloodshot, for no apparent reason, that is how sick i was.

and then -- bam!!! -- suddenly today i was able to go grocery shopping like a normal person. go figure. we'll see what tomorrow brings.

in summary:
- it took 8 days to get over the 1 gram shot.
- i can't do 1 gram shots. :) they are clearly too much for my body at this time.
 

Rrrr

Senior Member
Messages
1,591
update -- from the person who started this thread.

today is thursday. so far this week, on tuesday and wednesday, i was able to go out both days and then again at night on both nights! i went to two evening meetings, so i was simply sitting down, not active, during the nights out. but that is still extraordinary. heck, just going out in the day only is still extraordinary to me. but going out during the *day AND night* has not happened in years and years.

then last night, wednesday night, I shot up 2/10th of a gram of gamma globulin, it has been a week since my last injection (which was 3/10th of a gram). i thought i was safe with that tiny dose of 2/10th of a gram, but today I'm pretty sick as a result of last night's shot. so next time i'll shoot up only 1/10th of a gram. jeeesh. talk about med sensitive!

like usual, after i feel sick from an injection of gamma globulin, i did a coffee enema. and as is often the case, it helped.

again, as i said before, i hesitate to write about the good news because in the last few years i have experienced some gains from a special treatment -- only to lose them all within 1-4 months.

time will tell!
 

boohealth

Senior Member
Messages
243
Location
south
For med doses, just listen to your body. If your body likes 1/10th, then take 1/10th...even if there are folks out there taking much more...

I think building a house is because it gives you the building blocks--the immunoglobulins--of a healthy system.
 

Daffodil

Senior Member
Messages
5,875
so i have been googling and found that 1 gram of IVIG as subQ injection is about $80 USD. if KDM uses 1 gram a week (I don't know how much he uses but I hear it is low dose), that's about the same price as in Belgium.....so maybe I can just get it in NY state.

only problem is, I would have to get an Rx from my old NYC doctor, who is super expensive and would want me to travel there. might be worth it. the more i read about IVIG, the more it makes sense for me to try it, at this late stage of illness. there is some evidence of it helping on the internet.

wanted to save the little money i had left for other treatments down the road, but really feel like i am declining a lot.

sorry to hijack thread
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I just heard that at Costco, you can get Gamunex for $46/gram!
I hope I'm wrong, but I'd be extremely surprised if any retail pharmacy carried IgG products. I've never seen them outside of specialty pharmacies due to all the supplies and training involved. Let us know!
 

Daffodil

Senior Member
Messages
5,875
hi Ema. well...that price i read on some message board is not panning out, but I have not been able to get through to Costco yet. you can use those coupons but they never tell you the final price until you get the prescription. I heard it wouldn't be more than 10% off, though.

as for whether a retail pharmacy would dispense it...that's a good question too. when i spoke to walgreens and walmart, they didn't say they wouldn't dispense it, but i didn't speak to an actual pharmacist. could be another hurdle.

the cheapest price i got so far is about $100 per gram. this worries me because a woman who has been taking immunoglobulin for 25 yrs and has lived a normal life with CFS, has worked up to 25 grams (i assume a week). she needs to take that to maintain the improvement.

thanks
xox
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
hi Ema. well...that price i read on some message board is not panning out, but I have not been able to get through to Costco yet. you can use those coupons but they never tell you the final price until you get the prescription. I heard it wouldn't be more than 10% off, though.

as for whether a retail pharmacy would dispense it...that's a good question too. when i spoke to walgreens and walmart, they didn't say they wouldn't dispense it, but i didn't speak to an actual pharmacist. could be another hurdle.

the cheapest price i got so far is about $100 per gram. this worries me because a woman who has been taking immunoglobulin for 25 yrs and has lived a normal life with CFS, has worked up to 25 grams (i assume a week). she needs to take that to maintain the improvement.

thanks
xox
I have a really good pharmacist at Target and he couldn't order it in...but maybe if you are paying out of pocket it is a different story.

But like you said, hardly anyone can afford $2500/month or more for one med. I know I certainly couldn't.

We really need to get some better studies on using IVIG in ME/CFS and other diseases. My hope is that when the synthetic IgG is finally approved, they will get done because a lot of the cost of it comes from harvesting from human donors. A synthetic product will naturally be purified so the cost *should* come down and hopefully with that, the access will also go up.
 

Daffodil

Senior Member
Messages
5,875
hi Ema. i forgot about the synthetic version.

i think there was a study with IVIG and CFS, wasn't there?

wonder if i will have another problem trying to get it across the border. ugh

i would be eligible to get it free here if i turn up with immune deficiency...but i am not even sure if the testing here is any good.

xox
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
hi Ema. i forgot about the synthetic version.

i think there was a study with IVIG and CFS, wasn't there?

wonder if i will have another problem trying to get it across the border. ugh

i would be eligible to get it free here if i turn up with immune deficiency...but i am not even sure if the testing here is any good.

xox
I think the testing is reasonable here...I would get it if I were you, just to see. That would make it a whole lot easier.

I think one study was done with IVIG and CFS but I can't remember the details other than it didn't show clear benefit. But who knows what dose they used or for how long etc...