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Gamma globulin

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Rrrr, Feb 18, 2014.

  1. Rrrr

    Rrrr Senior Member

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    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
     
    Last edited: Apr 26, 2014
  2. Ema

    Ema Senior Member

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    Infusing today!

    First time doing 10g in one sitting since my adrenals punked out in Jan. But I'm down to my last 10g bottles and the insurance battle is just beginning again.

    Hope it all goes OK today!
     
    abporter, merylg, heapsreal and 2 others like this.
  3. Rrrr

    Rrrr Senior Member

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    good luck, @Ema!
     
    Wayne and Ema like this.
  4. Rrrr

    Rrrr Senior Member

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    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.
     
    justy, vli, merylg and 6 others like this.
  5. Rrrr

    Rrrr Senior Member

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    update: i am continuing to do well since getting over the bad patch (due to too-high a dose: 1 gram of gg).
     
    vli, merylg, Wayne and 4 others like this.
  6. Daffodil

    Daffodil Senior Member

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    Rrrr...is the IVIG helping your brain fog?
    Thanks!
     
  7. Rrrr

    Rrrr Senior Member

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    @Daffodil -- I think so, but it is still early days and time will tell. I have not yet figured out a dose, etc.
     
    vli likes this.
  8. Daffodil

    Daffodil Senior Member

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    thanks, Rrrr. I will follow your progress eagerly!
     
    Rrrr likes this.
  9. Rrrr

    Rrrr Senior Member

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    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!
     
    justy, Little Bluestem, vli and 5 others like this.
  10. Daffodil

    Daffodil Senior Member

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    when i asked KDM about ivig and other treatments, he said this is like "building a house".
     
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  11. Rrrr

    Rrrr Senior Member

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    hmmm. whatever that means...?
     
    merylg likes this.
  12. Ema

    Ema Senior Member

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    It will take twice as long as you think it should and cost five times as much and still there will be a toilet in the middle of your living room???
     
    Last edited: May 2, 2014
    justy, daisybell, wastwater and 8 others like this.
  13. boohealth

    boohealth Senior Member

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    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.
     
    merylg and Rrrr like this.
  14. Daffodil

    Daffodil Senior Member

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    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
     
  15. Daffodil

    Daffodil Senior Member

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    I just heard that at Costco, you can get Gamunex for $46/gram!
     
  16. Ema

    Ema Senior Member

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    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!
     
  17. Daffodil

    Daffodil Senior Member

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    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
     
  18. Ema

    Ema Senior Member

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    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.
     
  19. Daffodil

    Daffodil Senior Member

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    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
     
  20. Ema

    Ema Senior Member

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    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...
     

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