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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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    STARTING NEW TREATMENT OF GAMMA GLOBULIN SHOTS

    I am about to start a new treatment of gamma globulin shots. my doctor's nurse says taking gamma-globulin is "like borrowing a healthy person's immune system."

    Here are two short articles on Phoenix Rising and Health Rising about gamma globulin therapy, in which you will see that a number of ME/CFS expert doctors use it or have used it, including Doctors Teitelbaum, Chia, Peterson, and De Meirlier:
    1. http://phoenixrising.me/treating-cf...yalgia-infections-ivig-immunoglobulin-therapy

    2. This Health Rising article has a few more details and more patient comments
    http://www.cortjohnson.org/treating...onic-fatigue-syndrome-mecfs-and-fibromyalgia/

    This is a slide show from the lyme expert Dr. Burrascano. In his slide show he says IVIG (an IV of gamma globulin) is key to the recovery of long term lyme and ME/CFS http://www.lymepa.org/What_s_new__Slides_Sept_2008.pdf

    In short, folks with "our illnesses" (ME/CFS, Fibromyalgia, Lyme) who have been able to afford it have been doing IVIG (intravenous injections of gamma globulin) for a long time, But it was very expensive. I recall meeting someone years ago at a lyme meeting and she said she was a long term lyme patient who was now doing well due to IVIG. But I couldn't afford it at that time, as my insurance did not cover it. Well, apparently now it does!

    Plus, it is now easier to do gamma-globulin (gg) than it used to be. Now it is just a subcutaneous injection once a week that takes 1-2 hrs to do, as it is a slow subcutaneous "infusion" shots administered via a pump. But you no longer need to do an IV, so you do the infusion at home. Much easier for those who are homebound.

    Interestingly, Burrascano also says gg helps nerve damage.

    Important note for USA patients: Medicare now covers gamma-globulin shots if you have a deficient in your immune system, that is, if you have at least 2 "subclass deficiencies," which my doctor says I do have. He did a simple blood test to find out. With those two deficiencies, I have a diagnosis of "Common variable immunodeficiency" (CVID) (also known as "Acquired hypo-gamma-globulinemia") and thus I can now do the weekly subcutaneous gamma globulin infusions and get it covered.

    For me, the result of an immune system that is not working is *not* that I get every cold that comes around (I do not), but rather it is that I have active infections going on, such as EBV, Parvo virus, HHV-6, Mycoplasma, and others. My local doctor says it is a great sign that I did better *initially* with the antivirals we tried for me, but that the reason the antivirals did not continue to work for me, or work fully for me, was due to the fact that my immune system is deficient (i.e. has these above mentioned subclass deficiencies) and thus couldn't "back up" (my words, not his) the work of the antivirals. My doctor said that if I do gamma-globulin injections to address my immune system deficiency then the antivirals will likely work for me. Time will tell.

    SUBCLASS DEFICIENCIES
    Here are my lab test results that show that I have the two so-called "subclass deficiencies" (see where it says "Low" below), and it is these two subclass deficiencies allows my insurance, and also allows Medicare, to cover the subcutaneous gamma-globulin injections.

    TEST --> RESULT --> REFERENCE RANGE
    Immunoglobulin IGG: 920 (in range) (ref range 549-1584 mg/dL)
    Immunoglobulin IGA: 123 (in range) (ref range 61-348 mg/dL)
    Immunoglobulin IGM: 127 (in range) (ref range 23-259 mg/dL)
    Immunoglobulin IGE: 15 (in range) (ref range 0-158 IU/mL)

    IGG SUBCLASS 1: 417 (Low) (ref range 422-1292 mg/dL)
    IGG SUBCLASS 2: 441 (in range) (ref range 117-747 mg/dL)
    IGG SUBCLASS 3: 39 (Low) (ref range 41-129 mg/dL)
    IGG SUBCLASS 4: 14 (in range) (ref range 1-291 mg/dL)
    IGG Serum: 942 (in range) (ref range 700-1600 mg/dL)

    THIS IS THE BRAND I WILL USE
    http://www.gammagard.com/patients-and-families/

    PHARMACY THAT SUPPLIES IT
    This is the pharmacy I am using
    http://www.accredo.com/
    Accredo Customer Service number
    24 hrs/day: 877-315-6140 (to get a live person, press 2, press 1, press 1)
    They have been very helpful. If you want gamma globulin, you may want to call them to see if they can work with you, too?

    WEEKLY INFUSION METHOD
    The method of administration of Gammagard (the brand I will use), and for most gamma globulin, is an infusion via a pump that takes 1-2 hrs. There are youtube videos of folks doing it. Here are some:





    Here is a doctor talking about the infusion



    ANOTHER APPROACH: DAILY SHOTS METHOD
    I have also been reading posts from a woman named SusanK on the "Lymenet" forum. (http://www.youtube.com/watch?v=u4mw5V-q_A4) She does not want to do the 1-2 hour infusion. She wants to do the a daily subcutaneous gg shot. She linked to some papers on why that technique/treatment could be better (see below). Also, the Phoenix Rising article I linked to above talks about ME/CFS doctors using this same approach, too, so apparently it is not so new. (Here is the article again: http://phoenixrising.me/treating-cf...yalgia-infections-ivig-immunoglobulin-therapy)

    I start the Gammagard next week. I am supposed to do the 1-2 hour infusion via pump, but, as just mentioned, the more I research I do, the more I see that the new "cutting edge" way to administer it is via these daily subcutaneous "pushes" (shots) of small amounts (takes <5 minutes), instead of via weekly pump infusion (takes 1-2 hours and is a much larger amount). The below articles say the efficacy is the same, and actually the daily "pushes" (subcutaneous shots) are better, as they offer a more steady result, with the patient experiencing less highs and lows during the week. This method is popular apparently in some parts of the world if one's doctor is "up to date" with all the new methods. It is considered "off-label," but still allowable.

    Here are published articles to support this approach. They were posted by that woman SusanK on the Lymenet forum.

    1) Article from 2010: http://www.ncbi.nlm.nih.gov/pubmed/20082124
    2) Follow-up article from 2012: https://cis.confex.com/cis/2012/webprogram/Paper1818.html
    3) See section titled "Frequency of Treatment": http://www.nufactor.com/FA-IG_003.aspx

    Will keep you all posted.

    * * *

    as we all know, we need 2 of our immune IgG 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/!ut//c1/hY3dCoIwGECfxQeIfZu29FJLbbDNyUrUGzGpsPwDLamnzxeoOJeHw0E5WujKZ30tp7rvygalKKdFbFMZE0nAFiQAYlIP1lsfQ0gXn333AH9que_bM8pQvimOvqUxc0yIQk2AaTOyJJGU2oAOKAWr0DcYBB878XYixcUk-KUadWUmnjU0btupQGHmz4KzWeyK5MWr-9Ft1Ek9XMNYHtnPx9CmM17FxgfXAhhT/dl2/d1/L3dJdyEvd0ZFQkZRQWhBQSEhL1lJNXcvN19VRTRTMUk5MzBPR1MyMElTM080TjJONjY4MA!!/?itemId=408155#7_UE4S1I930OGS20IS3O4N2N6680
    _______

    UPDATE: I state this later in this tread, but it is worth repeating in the first post, after 5 months of being on this protocol:

    apparently there is not a set amount of gamma globulin or brand of gamma globulin that all doctors use across the board. unfortunately, each patient has to find:

    - the right amount for them personally
    - the right brand for them personally (different patients do well on different brands)
    - and the right mode of administration for them personally (IV vs IM vs Subq shots)

    good luck!!!
    Last edited: Jul 15, 2014
    wastwater, Misfit Toy, Helen and 3 others like this.
  2. Ema

    Ema Senior Member

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    This is a wonderfully informative thread and I wish you the best of luck as you embark upon your treatment.

    I have to correct one thing though regarding your diagnosis. To qualify for CVID, you must have low total IgG, low IgM or IgA and show an antibody deficiency by failing a vaccine challenge. This is a pretty high bar to meet and it is different than hypogammaglobilinemia or selective subclass deficiencies. It's a rare immunologist that will agree to treat subclass deficiencies. Generally you will also have to prove a history of infections requiring prophylactic antibiotic regimens and costly hospital stays. It can be done but it is a hard and long battle for most.

    Currently there is a war waging among insurance companies that no longer wish to pay for anything other than CVID (and even more serious immune deficiencies) until your total IgG level is less than 400. Most immunologists agree that anything under 600 means you functionally have no antibody immune system and that these new guidelines are insane. Selective subclass deficiencies are almost impossible to get covered under the new guidelines.

    If insurance companies do not get enough pushback from patients and doctors, these new guidelines will almost certainly be expanded to all insurance companies in all regions. The Primary Immune foundation is aware and fighting this battle for us but they need our support if more of us wish to qualify for this treatment.

    I encourage everyone to get their total IgG and subclasses tested. If we can show enough of us have these deficiencies in ME/CFS, we will have better luck extending insurance coverage to more people and getting better research studies done to show why these immune abnormalities exist.
    wastwater, vli, ahimsa and 4 others like this.
  3. Rrrr

    Rrrr Senior Member

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    If anyone has done gammaglobulin, I'd love to hear about it on this thread. I also have to search this forum to find earlier posts. I have not done that yet.
  4. Rrrr

    Rrrr Senior Member

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    thank you, ema, for your clarification. but i have to re-read this tomorrow, as i can't quite grasp what you are saying about qualifying for CVID.
    catly likes this.
  5. Rrrr

    Rrrr Senior Member

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    after reading about others' experiencing with this med, my guess is that the key for us hypersensitive patients (like me) have to start very "low and slow" (i.e. do very little of the med gammaglobulin and slowly titrate up). this is the thread i read to make me think this: http://forums.phoenixrising.me/index.php?threads/low-igg-and-ivig-troubles.26490/#post-431614

    i'm so sorry that some of us (me included!!) have such horrible reactions to our meds. it is terrible. as if life is not hard enough!
    Misfit Toy likes this.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I would love to try this stuff as i think it would help my chronic sinusitis and i think i fit one criteria in that im not good at making antibodies eg after hep b vaccines as well as after initial ebv infection. The issue i have is my iga over the last 7 years has been high 4.3 (.7-3.6) and my igg has been within normal range. this goes along with the neutropenia, lymphocytosis and low nk function. It would be nice to be so reliant on antivirals and antibiotics.
  7. Sea

    Sea Senior Member

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    I must admit I am surprised that those numbers would give you access to this treatment Rrrr, but I'm glad it has and I hope it helps.

    A doctor once suggested this could be helpful for me too but that I didn't quite fit the criteria for it to be covered.
    My total IgG and all IgG subclasses are on the lowest number of normal range
    My IgA is less than half of the lowest number of the range. (That gives me a diagnosis of Partial IgA deficiency)
    My NK cells are low in number and function too.
    SOC and heapsreal like this.
  8. Misfit Toy

    Misfit Toy Senior Member

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    I have the diagnosis of CVID from 2 different immunos. I am like you Rrrr, I don't get every infection that comes my way, but I constantly am fighting lingering infections and get 2 major infections a year.

    I like the idea of having a shot of this everyday. I had an infusion today and tomorrow, I will probably be bursting through the roof with energy. It's fun!
    justy, ggingues and Sea like this.
  9. Rrrr

    Rrrr Senior Member

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    i'm so sorry you did not get this treatment covered! did you ask how much it cost to do the micro-dose of just 1 gram per week? many of our ME/CFS doctors say that is better anyway! (see this article: http://phoenixrising.me/treating-cf...yalgia-infections-ivig-immunoglobulin-therapy
    Sea likes this.
  10. Rrrr

    Rrrr Senior Member

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    @Misfit Toy, so you do a daily dose then?
    how much do you do daily and which brand?
    how long have you been doing a daily dose?
    and is it helpful?
    how long did it take to start to help you?

    you know, the usual questions. :)
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  12. Sea

    Sea Senior Member

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    I haven't really looked into it at all as I thought the cost would be prohibitive. I'll have to follow it up if it could be done at a reasonable cost.
  13. Ema

    Ema Senior Member

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    1g per 5ml in Hizentra.

    It varies depending on the concentration. Hizentra is 20% but most are only 10%.
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Good to hear, do you crash in a bad way after the energy is expended? Hope this is lifting your spirits!

    GG
    Misfit Toy likes this.
  15. Ema

    Ema Senior Member

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    I don't think it can. My 10 g dose is well over a thousand dollars a week.

    But a European company has just recently developed a synthetic IgG replacement. If approved the cost could really come down. Currently it all has to be harvested from human plasma donors.
    Sea likes this.
  16. Rrrr

    Rrrr Senior Member

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    i think since Gammagard is 10% solution, it is 1 gm of gammaglobulin per 10 ml of the liquid.
  17. Rrrr

    Rrrr Senior Member

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    i know a MA, USA, doctor who charges $70/wk for an in-house shot of it for those who are not covered by insurance. he gets a big multi-use vial of it, and then everyone gets their shot at once, so that divides up the cost. he has a ton of lyme and me/cfs patients.
    m1she11e and Misfit Toy like this.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    so given as an im injection not an infusion?
  19. Rrrr

    Rrrr Senior Member

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    at his office? hmmm. i am not sure! i think it could be given as an IV. but i am not sure. maybe it is an IV push?
    heapsreal likes this.
  20. Ema

    Ema Senior Member

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    I can't see how micro dosing would work at all. Especially if we are working on a hypothesis that ME/CFS may also have an autoimmune component. Doses for autoimmune diseases are typically about 5x higher than what is taken for immune replacement.

    It's taken every bit of 10g a week to get my levels up into range and my subclass 3 still is under range half the time.

    I'd also like to know especially how KDM is splitting out IgG1 and IgG 3.

    I'll read the rest of the links in more detail tomorrow though and perhaps it will answer my questions!

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