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Gamma globulin

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

  1. acer2000

    acer2000 Senior Member

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    I took IVIG for a few months. It made me feel really overstimulated/agitated. Made my sensory hypersensitivity/irritability worse. It took a couple weeks for this effect to wear off after each infusion. It also made my cytokines go up. Ultimately, I stopped doing it. I don't think I am any worse or better in the long term from taking it, but it was a bit uncomfortable after each infusion. I haven't met anyone else with this response and my doctor was kind of confused. I took gammunex 10g every 2 weeks (iirc).
     
  2. lartista

    lartista Senior Member

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    Dear Ema, Dr. Klimas never mentioned which company I just saw the video up above. I am still waiting for her letter... She no, not now to VALTREX... we are going a different direction, continueing with the IGg. But it was an 120 minute meeting... 1.5 hours and I was sick as a dog.. so it was hard to follow all. I begged her to write down everything... I will let you guys know when I get her letter. I started again LDN last night at 1.5 mgs. Thanks, Francesca
     
    Hanna likes this.
  3. Rrrr

    Rrrr Senior Member

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    hi all,

    i'm the person who started this thread and i'm here to give an update on my gamma globulin treatment.

    in short, i am holding my breath, as i am very happy with the early results. i'm holding my breath because i have had good results before at the start of a treatment, only to lose all gains later, just a few months later.

    the amazing part of this whole thing is how utterly serious everyone (insurance, Acreedo pharmacy and the nurse they sent to my house, etc) is taking this dx of Primary Immunodeficiency Disease and the resulting gamma globulin treatment. case in point: i got sent a HUGE box full of supplies for the home infusions and a nurse came to the house to teach me how to infuse, etc. i assume the pharmacy (Acreedo) gets a lot of money from my insurance for this, as they have really taken this seriously. :)

    before i tell you how i have done after each of my 4 shots to date, i'll mention that i am on antivirals (Famvir 500 mg 2x/day) and have been on them for 10 months now, but without great results. i did do well on the antivirals twice (yippee!), but it did not last (once it lasted for 1.5 months and the other time the good results lasted 1 wk). that is why my doctor thought this gamma globulin treatment could help me. he wanted to boost my immune system so that the short-lived good results i had gotten from the antivirals would last longer than the short spells they lasted. all this is discussed in my first post on this thread.

    also, fyi, as a background, i have lots of chronic viruses and infections, such as EBV, HHV6, parvo, mycoplasma pneumonia and lyme (and others?). but i rarely get colds or anything.

    anyway, so my ME/CFS doctor's standard treatment for this diagnosis of PIDD is 10 grams per week of gamma globulin, administered in a weekly subq infusion via pump (either using the brand called hizentra or gammagard). but i had found in my research that a number of well-known ME/CFS docs do just 1 gram once per week. or less. so i decided to go super low (low dose) and super slow. that is my usual with all meds, because i'm hyper sensitive to all meds. (but fyi, i have talked to other ME/CFS patients who do 10 grams per wk, one is upping to 12 grams, too. so i think everyone is different.)

    it has been like this for me so far:

    wk 1: GammaSTAN, 1/12th of a gram of gamma globulin (yes, that is "one twelfth" of a gram)
    date: Feb 19, 2014
    administration: IM shot in my doctor's office
    reaction: a bit sick the days after the shot, then fine, not better or worse

    wk 2: GammaSTAN, 1/3rd of a gram of gamma globulin
    date: Feb 26, 2014
    administration: IM shot in my doctor's office
    reaction: very very sick for a full week after the shot, each day getting worse. then, suddenly, greeeeat for 3 days in a row (i.e. until i did the next shot). markedly increased energy and stamina, and happier!

    wk 3: GammaGARD, 1/2 gram of gamma globulin
    date: March 7, 2013
    administration: subq shot via infusion pump, at home
    reaction: very sick for 1 day, then greeeat for 3 days. markedly increased energy and stamina, and happier!

    wk 3.5: GammaGARD, 1/2 gram of gamma globulin
    date: March 11, 2014 (today!!)
    administration: subq shot via infusion pump, at home
    reaction: To Be Determined
     
    lnester7, voner and heapsreal like this.
  4. Rrrr

    Rrrr Senior Member

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    Thanks to all who have added their input on this thread. I wonder if the folks who reacted badly to the gamma globulin had reacted badly due to being given WAY too high a dose to start with? We are all so sensitive.

    P.S. I have been sick for 24 long and hard years.
     
  5. Ema

    Ema Senior Member

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    I think so. Many immunologists who do not understand our population very well give loading doses (start super high and then taper down) rather than the other way around. It has the propensity to cause huge problems.

    So glad things are going well for you!

    And yes, they are paid well...I think the cost billed to insurance is somewhere around $6,000/treatment (depending on your dose most likely). They will usually go WELL out of their way to keep your business...
     
    Rrrr likes this.
  6. Rrrr

    Rrrr Senior Member

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    @Ema -- how soon did you start to notice any good results on your journey with gamma globulin?
     
  7. Ema

    Ema Senior Member

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    Honestly, it was probably about 4-6 months in that I noticed I was really feeling better. That was when I was able to wean thyroid meds and cortisol too.
     
    Rrrr likes this.
  8. Rrrr

    Rrrr Senior Member

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    i talked to two people who said they started to feel better right away. i wonder why some do and some need more time on it.
     
  9. Rrrr

    Rrrr Senior Member

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    hey, i should also mention that i'm on Nexavir, too. been on it for 3 yrs now. it is also an antiviral (injectable med). one of the me/cfs doctors, was it titlebaum (sp?) said he gave that to people before he gave them gamma globulin.

    personally, i have never felt nexavir helped me, but it is an antiviral, so i assume it can't hurt me.
     
  10. Ema

    Ema Senior Member

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    I did that too for about a year but stopped last winter.

    It was the first antiviral I tried and I did think it helped some. But not as much as the other antivirals and I grew weary of the daily injections.
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Nexavir is not exactly an antiviral--more like it strengthens cells walls preventing viruses from entering the cell. Then, I think, they are more vulnerable to the immune system.

    This is a very layman's take on how Nexavir works. It does help me though.

    Sushi
     
  12. Ema

    Ema Senior Member

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  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  14. lartista

    lartista Senior Member

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    I have the same thing... I went and got IV IGG three visits three weeks apart and I did great. I was hiking in New Mexico. I was mentally thinking about going back to the gym... That was July 2013. Then I went back to the USA Dec 2013 and I had two treatments more three weeks apart and I WENT INTO A SEVERE RELAPSE! I am not about 8 weeks into this relapse and I am about now a 3 to 5 on the Lerner scale. I thought for sure Klimas would tell me to drop the IV IGG... she said NO. I want you to pretreat with predisone. She said something about maybe it inflamed my whole system and activated all viruses, even ones I did not have... But I was not to give up... so now I am waiting to hear from her with her letter of instruction. Francesca
     
    Misfit Toy likes this.
  15. Rrrr

    Rrrr Senior Member

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    @lartista, please consider not doing a full dose for your next IV. also, find out if the gg you got earlier is a different brand from the gg you got later (and caused a relapse). i hear diff patients react differently to the different brands of gg.
     
  16. Misfit Toy

    Misfit Toy Senior Member

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    Had 4th month of IVIG two days ago. Also, started antibiotics for walking pneumonia. Feel SO much better.

    @lartista I had the same reaction to 3rd IVIG, but I think it's because I was sick with mycoplasma and didn't know it. The same thing didn't happen this time. I'm fine.

    I had 5 grams less however and did it slower too. Over 8 hours.

    So far, so good!
     
    lnester7 likes this.
  17. lnester7

    lnester7 Seven

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    Please keep us updated. I wonder if we can try w/o having low IGs (If we pay out of pocket)
     
    Rrrr likes this.
  18. Rrrr

    Rrrr Senior Member

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    yes, i think we can. i know a doctor's office that is giving it to a patient who has only one low IG (and thus not the usually pre-required 2 low IGs needed for insurance coverage). and that patient is paying out of pocket. they are getting the brand called GammaSTAN, and it is 1/3rd of a gram of gamma globuline in each 2mL shot.
     
    lnester7 likes this.
  19. Rrrr

    Rrrr Senior Member

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    Hmmm.

    @Misfit Toy , i have mycoplasma, too. so are you saying that if you have mycoplasma the gamma globulin will hit you hard after about a month of treatment? in other words, the "hit" comes after a while, not right away?

    how long did it take you to recover after such a hard hit?
     
  20. Misfit Toy

    Misfit Toy Senior Member

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    @Rrrr , my doc for some reason doesn't like giving IGG when one is sick. He says that people have worse reactions. I am not sure why the 3rd IVIG was so hard for me. It just was. It was awful. I was freaked afterwards. Went on prednisone.

    But, all that I was experiencing could have been the mycoplasma. This time was much better. I now get them every 3 weeks. I think it was better because I had less, and because I went on an antibiotic.

    I am not sure if the hit comes in beginning or later or any of it. I am too new at this to know.
     
    Rrrr likes this.

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