The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Subcutaneous immunoglobulin therapy

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by RYO, Dec 28, 2015.

  1. RYO

    RYO Senior Member

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    I am interested in finding out the experience of those who have tried subcutaneous immunoglobulin. Specifically those patients who have normal IgG levels.

    Response rates, side effects, length of treatment, etc.
     
  2. Denise

    Denise Senior Member

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    Just curious - what indication(s) would the subcutaneous immunoglobulin be administered for (since you are asking those who have normal IgG levels)?
     
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  3. minkeygirl

    minkeygirl But I Look So Good.

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    Most insurance won't pay for it without a specific diagnosis of an immune disorder. Like CVID. And it's very expensive.
     
  4. RYO

    RYO Senior Member

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    There is sparce evidence for use of IVIG in ME/CFS. But the rituximab trials raise the possibility that there could be autoimmune etiology in subset of ME/CFS patients.

    I personally would be more open to enroll in trial of SCIG vs rituximab.

    IVIG useful in conditions such as CIDP.

    Some have mentioned that Dr Chia has used IVIG in patients with prominent fibromyalgia symptoms.
     
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  5. deleder2k

    deleder2k Senior Member

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    I think this film is available in English somewhere. As far as I know one of two in this movie recovered from bedridden to almost 100% (working full time) with 0.825g of GG weekly. I think she got 5ml of Gammanorm.

     
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  6. RYO

    RYO Senior Member

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    Do you know how long the patient was treated with Gammanorm?
     
  7. Denise

    Denise Senior Member

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    I have heard of some evidence but not much evidence and I don't know of robust evidence that has been replicated in such a way that insurance would be likely to cover it.
    From what I understand IVIG or SCIG is very difficult to get covered by insurance and paying privately is very expensive. A couple of years ago I believe it was about $10,000 a month(!) which is way beyond the reach of most people.
     
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  8. deleder2k

    deleder2k Senior Member

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    As far as I know she stills gets it. If it works it won't cure ME, but it may lessen symptoms.
     
  9. RYO

    RYO Senior Member

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    Thanks for the info. I am planning on trying SCIG in a couple of weeks. Fortunately, my insurance company will cover most of treatment cost. My rheumatologist also has experience using rituximab. I am a little hesitant about trying it since Dr Chia thought my symptoms triggered my Coxsackie virus. I haven't been able to definitively disprove viral persistence.
     
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  10. Helen

    Helen Senior Member

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    I get one injection of Beriglobin weekly to support my immune system while being treated for a late stage Lyme infection.

    I noticed in this text ( to the right of the picture of the dog) about Dr. Daniel Peterson´s approach to acute post-infection patients that he uses GG.

    "When asked later about the importance of treating patients early he said it took him years to learn that the best approach with acute post-infection patients – people who have recently become ill – was to immediately aggressively treat them with immunoglobulin and antivirals."
     
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  11. Rlman

    Rlman Senior Member

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    in people symptomatic with Parvovirus, IVIG is used to heal it, even when the patient has normal IGG levels. Why isn't this approach used for other infections like EBV, CMV, HHV6 etc?
     
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  12. Billt

    Billt Senior Member

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    My son has been sick 2 years now. One Dr wanted to treat with IVIG since some of his immune system is compromised. Very low CD19 and CD4 B cells. We tried for 6 months to get insurance to cover. But all of his other IGG levels were normal. so not covered. They seem very strict on this, you have to have Primary Immune Deficiency before they will cover. Another told us that this would not help anyway. Who knows !! but seems to make since to me that if we could get his immune system corrected, then he may be able to get over the EBV
     
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  13. RYO

    RYO Senior Member

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    It would be nice if we had a trial of SCIG for ME\CFS patients. To be honest, it's hard to say whether immunoglobulin works by helping to clear viral persistence or other immunomodulatory mechanism.
     
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  14. RYO

    RYO Senior Member

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    Do you know if a case study was ever written regarding these patients?
     
  15. deleder2k

    deleder2k Senior Member

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    No case study was written.
     
  16. Daffodil

    Daffodil Senior Member

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    i took low dose subQ immunoglobulin for several months. i did not notice any improvements that i could attribute specifically due to that, but my doc says it works slowly in the body. i know of someone who has been in remission for 30 yrs while taking IVIG 25 mg a month. her insurance pays for this.
     
  17. RYO

    RYO Senior Member

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    In other autoimmune diseases such as CIDP or MMN, patients usually get prescribed a loading dose then a lower maintenance dose. Both are based on weight (kg).

    Some proposed mechanism of action:
    "Other B-cell mediated effects of IVIg include inhibition of antibody production [33], inhibition of B-cell differentiation [60], inhibition of production of interleukin-6 and tumour necrosis factor-α [63], induction of B-cell apoptosis [64], down-regulation of specific auto-reactive B-cells [70] and regulation of B-cell subsets expressing CD5 [69], thereby suppressing the auto-antibody producing CD20+ B1 cells."

    "In animal models of experimental autoimmune encephalomyelitis and autoimmune uveitis, IVIg is thought to reduce the production of interleukin-2 and interferon-γ by T-cells [47, 55], preventing the development of disease. This is also thought to be one of the major effector mechanisms in the treatment of GBS and CIDP."

    These anecdotal reports of improvement/remission are interesting. Again, I wish there was a well designed trial for SCIG in ME/CFS patients. We could possibly use cytokine profiles to generate two subsets and differentiate whether patients with "short term" disease respond better or worse with SCIG.
     
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  18. ErdemX

    ErdemX

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    Next month I will be visiting my doctor (KDM) for a follow-up and I'll ask him to add SCIG to my protocol. I know that he has quite experience with it, he's using it on patients with low immune profile (My NK cells were within the normal range)

    In a recent presentation about Lyme Borreliosis, Joseph J. Burrascano talks about the underuse of IVIG and how useful that it can be with its anti-inflammatory and nerve healing properties. (Please watch the section after 1:04:00)

     
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  19. Clerner

    Clerner Senior Member

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    I have
    I have high igg levels of parvovirus and high levels of ebv. Been on av's for over 2 months and they have helped some(vertigo, brain fog, eye focusing) but still in so much pain! All over inflammation pain/fibromyagia. Hard to know if its ebv or parvo pain. Wonder if injections (low) would help pain? It sounds like insurance wont cover it. Injections cost less and may be helpful even 1x per week?
     
  20. justy

    justy Senior Member

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    Hi, I have been self injectiong GG at low doses for about 4 months now. My IGG levels are normal whilst IGM has been persistently elevated for a couple of years. I have a dx of M.E with Lyme and co infections and immune system disrupted. I have low levels positive ANA (Speckled).

    I was prescribed 3 ml twice a week of Gammanorm. I get it in Europe and it is not very expensive here! The first two doses left me severely dizzy for around three weeks I could barely stand up - felt like I was on a boat all the time. So I had a break and it went away, but I was also receieving glutathione IVs and IV vitamins so felt nothing else much - a bit crappier than normal.

    I restarted about 4 weeks later at a lower dose - just 1.5ml twice a week and this caused a SEVERE herx reaction after two weeks at this dose. I felt like I had flu, without the normal flu symtpoms, I had severe muscle aches and pain, fatigue etc. My Dr described this as a herx/cytokine reaction, as the GG runs around and clears up bacteria viruses etc 9simplified explanation) I have read on forums for people with CVID that IVIG can do this int he beginning if you have infections hanging around.

    I was advised to drop the dose to a place where it felt comfortable and to keep on, even if the dose was very small. I now am on only 1.4ml a week and still increasing slowly - I never want to feel as ill as I did when I had the herx - and it took 3 weeks to wear off as that is how long it takes the GG to leave the body.

    I feel generally much better on it than I did before Before starting I was almost unable to be out of bed for much of the day and could not cook a meal. Now I can be up and am cooking most days. However I have also just added a new drug for MCAS and that is also helping my functionality a lot, so hard to say if it just the GG or not, but my feeling is it is helping, and I will carry on.
     
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