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immunoglobulin

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by rek, Jul 11, 2010.

  1. rek

    rek

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    I wsa diagnosed with Common Variable Immune Deficiency (CVID) after already succumbing to CFS. The treatment for this is IVIG (Intravenous Immunoglobulin).
    Concomitantly at least, if not causally my CFS symptoms improved considerably. I have been doing IVIIG once a month for about 18 months now. I still do noot know whether there is a causal relationship but I do know I improved from a state of fever, extreme head pain, head ringing, malaise, daily bed rest of 4+ hours to no fever, mild head discomfort, less malaise, much less bedrest, some ability to concentrate and some ability to exercise.
    I am aware that there is a trajectory of "slow improvement" from extreme beginnings in most cases of CFS and I am by no means well. But I wonder if anyone else has positive tales to tell of using IVIG?
    Presumably IVIG increases, inter alia, the ability to produce antibodies. Maybe this is effective in helping fight relevant pathogens?
     
  2. Karin

    Karin

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    Don't have personal experience, but just wanted to mention that many kids with autism that I know have been treated with IVIG with great results at all levels (cognition, physical, behavioral, etc...), as part of the Defeat Autism Now! protocols. They also do once a month, I think.
     
  3. IntuneJune

    IntuneJune Senior Member

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    CVID and IVIG

    I have the same diagnosis and have been receiving IVIG for almost three years (although twice the treatments were interrupted for three months).

    Six months after starting treatments I did notice a change and did feel better, especially a sense of strength and less fatigue.

    However almost three years from starting treatment, I actually am not doing as well. You can imagine how disappointing this is. IVIG is certainly helping with the infections.... but no long my FMS and severe fatigue,

    June
     
  4. Karin

    Karin

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    And I wanted to mention that it does not only benefit those ASD kids with CVID, but also those with 'normal' immune systems. The problem is the cost, since insurance does not take it of course unless there is documented immune deficiency.
     
  5. IntuneJune

    IntuneJune Senior Member

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    Welcome to Phoenix Rising, by the way!!!!!

    June
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  7. rek

    rek

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    Thanks! I have visted the site several times but only just joined. So much has already been said it is hard to know whether one is just contributing noise or not. But I had not seen anything about IVIG before.
    Like everyone else no doubt, I am interested in the XMRV research. I do not yet know whether I am XMRV+ but I had privately (and naively) wondered whether a boost to the immune system might help fight such a pathogen. As usual, far too many unknowns and too much personal ignorance to enable any sound inferences :(
     
  8. IntuneJune

    IntuneJune Senior Member

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    Who knows

    Rek, it is possible my present problem is something new; by the blood work, my immune system is being supported except for IgM which will not improve much.

    May I ask where you receive your infusions? Also, have you signed up with the Immune Deficiency Foundation? They are a great resource.

    June
     
  9. muffin

    muffin Senior Member

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    Info on Intravenous immune globulin (IVIG)/Immunoglobulins (Ig)

    There was a discussion yesterday in which Markmc20001 provided info on the many uses of blood products. What I did NOT know and was super shocked to learn is that blood products are used in many different ways, including Immunoglobulin therapy. As MarkMC pointed out, it does take thousands (In some instances, blood from as many as 100,000 donors is used.[/B]) to create this blood product. Remember, there are people out there donating their blood who know or don't know all that they have wrong with their bodies and that blood and those problems are entering into the blood supply AND this therapy. Just an FYI since I was shocked by the info MarkMC provided.

    Below is background info on this therapy. I would read this and then ask my doctor if this is a good thing to pursue, esp. given that we all have whacked out immune systems.
    Very interesting and a little bit scary - to me anyway.
    ------------------------------------------------------------------------------
    http://www.wellness.com/reference/allergies/intravenous-immunoglobulin-therapy/
    BACKGROUND
    Intravenous immune globulin (IVIG) is made of antibodies that have been extracted from blood donations from 3,000-10,000 healthy donors. IVIG is used to treat many autoimmune disorders, idiopathic diseases (disease of unknown cause), and infections.

    Immunoglobulins (Ig) are glycoprotein molecules that function as antibodies. During an immune response, these antibodies, which are present in the bloodstream, detect and bind to antigens (foreign substances that are capable of inducing immune responses). Examples of antigens include bacteria, viruses, mold spores, dust mites, animal dander, and fungi. Once the antibodies attach to the antigen, white blood cells are stimulated to destroy the antigen. Since antibodies are present in the bloodstream, they are considered part of the humoral immune system.

    Immune globulin products from human plasma were first used in 1952 to treat immunoglobulin deficiencies (like IgG deficiency). Initially, treatment was administered intramuscularly (injected into the muscle). Intravenous (injected into the vein) immune globulin was shown to be effective in autoimmune idiopathic thrombocytopenic purpura (ITP) in 1981. This method is generally preferred over intramuscular injections because it has shown to be more effective.

    By providing antibodies to patients who have weakened immune systems, IGIV can help reduce the risk of infection. Treatment may help prevent patients with Kawasaki disease from developing coronary artery aneurysms (weakened of the main artery in the heart). IGIV may also help increase the number of platelets in patients who have idiopathic thrombocytopenia purpura (ITP).

    The U.S. Food and Drug Administration (FDA) has approved immunoglobulin products for the treatment of primary immunodeficiencies, immune-mediated thrombocytopenia, Kawasaki disease, hematopoietic stem cell transplantation (in patients older than 20 years), chronic B-cell lymphocytic leukemia, and HIV in children.

    Immune globulin products contain sterile, purified immunoglobulin G (IgG). The products typically contain more than 95% unmodified IgG and only trace amounts of immunoglobulin A (IgA) or immunoglobulin M (IgM). IgG antibodies are the smallest, but most abundant antibodies in the body, making up 75-80% of all the antibodies in the body. They are present in all body fluids. The IgG antibodies are considered the most important antibodies for fighting against bacterial and viral infections, and they are the only antibodies that can cross the placenta during pregnancy. IgA antibodies are primarily found in the nose, airway passages, digestive tract, ears, eyes, saliva, tears and vagina. These antibodies protect body surfaces that are frequently exposed to foreign organisms and substances from outside of the body. IgM antibodies present in the blood and lymph fluids, and they are the first antibodies that are produced in response to an infection.

    Side effects from IVIG occur in less than five percent of patients, according to researchers. Common side effects typically occur immediately after infusions and may include flushing (reddening of the cheeks), headache, chills, dizziness, increased sweating, leg cramps, pain and tenderness at the injection site, tiredness, muscle pain, lower back pain, nausea, and low blood pressure.
    Since IVIG is pooled from thousands of blood donors, it is theoretically possible that viruses or bacteria could be transmitted in the product. However, since 1985, all products are tested for HIV and hepatitis and the risk of contracting the virus is extremely low.

    SIDE EFFECTS
    General: Since intravenous immune globulin (IVIG) is pooled from thousands of blood donors, it is theoretically possible that viruses or bacteria could be transmitted in the product. However, since 1985, all products are tested for HIV and hepatitis.Side effects from IVIG occur in less than five percent of patients, according to researchers. Common side effects typically occur immediately after infusions, and may include flushing (reddening of the cheeks), headache, chills, dizziness, increased sweating, leg cramps, pain and tenderness at the injection site, tiredness, muscle pain, lower back pain, nausea, and low blood pressure.

    If side effects occur during treatment, the infusion should be slowed or stopped to alleviate symptoms. If symptoms are anticipated, the patient may take antihistamines and/or intravenous hydrocortisone to prevent a reaction.

    Anaphylaxis: IVIG can induce serious anaphylactic reaction in patients who have immunoglobulin A (IgA) deficiency. This happens in about one out of 500 to 1,000 patients. Anaphylaxis is a rapid, allergic reaction that affects the whole body. Anaphylaxis typically occurs immediately after treatment and is associated with sensitization to IgA in patients with IgA deficiency. Symptoms of anaphylaxis can vary from mild to severe and may be potentially life threatening. The most dangerous symptoms are low blood pressure, breathing difficulties, shock, and loss of consciousness, all of which can be fatal. Using IgA-depleted immune globulin may help prevent this reaction from occurring. The presence of IgG anti-IgA antibodies is not always associated with severe adverse reactions to IVIG.
    Aseptic meningitis: There have been rare reports of aseptic meningitis after IVIG infusions. Patients should tell their healthcare providers if they experience fever, neck stiffness, headache, confusion, nausea, or vomiting.

    Cardiovascular: There have been rare reports of heart attacks after IVIG. A common side effect of IVIG is low blood pressure.

    Kidney failure: There have been reports of kidney failure after IVIG infusions, although it is uncommon. From June 1985 through November 1998, the U.S. Food and Drug Administration (FDA) received 88 reports of kidney damage related to IVIG in the United States. Acute kidney failure associated with IVIG therapy occurs with the sucrose-stabilized formulation, but not with the D-sorbitol-stabilized formulation. Patients who experience decreased urination, sudden weight gain, swelling of the legs or ankles, or shortness of breath should consult their healthcare providers immediately because these may be signs of kidney failure. Patients should tell their healthcare providers if they have kidney diseases because they may have an increased risk of developing kidney failure.

    Liver disease: Hepatitis C has been transmitted to patients via IVIG.

    Skin infection: Life-threatening human parvovirus B19 infections have been transmitted via IVIG.
    Other: Other side effects may include post-infusion hyperproteinemia (high levels of protein in the blood), increased serum viscosity and pseudohyponatremia (low levels of sodium in the blood), thrombosis (blood clots deep in the legs), transient serum sickness, transient neutropenia, severe cutaneous vasculitis, dermatitis (such as eczema), and hair loss.

    PREPARATIONS
    Intravenous immunoglobulin (IVIG) consists of the antibodies extracted from pooled blood donations from 3,000-10,000 healthy donors. In some instances, blood from as many as 100,000 donors is used.[/B]
    Immune globulin products contain sterile, purified immunoglobulin G (IgG). The products typically contain more than 95% IgG. Most preparations contain trace amounts of IgA, which may sensitize an IgA-deficient patient during long-term treatment. Patients who suffer from severe, recurrent viral or bacterial respiratory tract infections or have isolated IgA deficiency (and additional IgG2 and IgG4 deficiency) may develop severe anaphylactic reactions after IVIG treatment, which may be life threatening. Therefore, these patients should receive the first infusion in the hospital under medical supervision.

    Immune globulin products also contain small amounts of cytokines, CD4 cells, CD8 cells, and human leukocyte antigens (HLA). Cytokines are produced by immune cells to stimulate the immune response. CD4 cells detect antigens in the body. CD8 cells detect and destroy body cells that are infected with a bacteria, virus or fungi. HLA molecules help the body's immune system distinguish between self and non-self (foreign or invading) substances.

    IVIG is available in different concentration (strengths). The U.S. Food and Drug Administration (FDA) has approved Gammagard S/D, Gammar-P IV, Gamimune-N, Iveegam, Polygam S/D, Sandoglobulin Venoglobulin-I, Venoglobulin-S, Carimune/Panglobulin, Gamunex, and Baxter AG.
    USES
    General: Immune globulin products have been used to treat many autoimmune disorders, idiopathic (unknown cause) diseases, and infections. The beneficial effects of IVIG for the prevention infections in patients with primary immunodeficiency syndromes (disorders caused by intrinsic or genetic defects in the immune system) are well established. IVIG has also shown to prevent severe lower respiratory tract infections, but not upper respiratory tract and non-respiratory infections in patients with common variable immune deficiency (CVID). Researchers found that CVID patients with such infections respond better to surgery and medications.

    IVIG is typically administered intravenously for about two to four hours a day for two to seven days. The patient usually receives another single dose every 10-21 days or every three to four weeks, depending on the type and severity of the condition. Patients typically start responding to treatment after about eight days. Continual treatment helps the patient maintain healthy levels of antibodies in the blood, which boosts their immune systems.

    FDA-approved uses: The U.S. Food and Drug Administration (FDA) has approved IVIG for the treatment of primary immunodeficiencies, immune-mediated thrombocytopenia, Kawasaki disease, hematopoietic stem cell transplantation (in patients older than 20 years), chronic B-cell lymphocytic leukemia, and pediatric HIV type I infection. Patients who have these disorders have decreased levels of antibodies.

    Other uses: IVIG has been used to treat many other conditions, including aplastic anemia, pure red cell aplasia, diamond-Blackfan anemia, autoimmune hemolytic anemia (immune system attacks red blood cells), hemolytic disease (destruction of red blood cells) of the newborn, acquired factor VIII inhibitors, acquired von Willebrand disease, immune-mediated neutropenia (low levels of neutrophils, which are white blood cells), refractoriness to platelet transfusion, neonatal alloimmune/autoimmune thrombocytopenia, post-transfusion purpura, thrombotic thrombocytopenia purpura/hemolytic uremic syndrome, epilepsy (seizure disorder), pediatric intractable Guillain-Barr syndrome, chronic inflammatory demyelinating polyneuropathy, myasthenia gravis, Lambert-Eaton myasthenic syndrome, multifocal motor neuropathy, multiple sclerosis (degenerative disease of the brain and spinal cord), rheumatoid arthritis (adult and juvenile), systemic lupus erythematosus (autoimmune disorder that causes chronic inflammation), systemic vasculitides, dermatomyositis, polymyositis, inclusion-body myositis, Wegener granulomatosis, adrenoleukodystrophy, amyotrophic lateral sclerosis, weakened heart muscle, chronic fatigue syndrome, congential heart block, cystic fibrosis (inherited disease causing the body to produce too much mucus), autoimmune blistering dermatoses, diabetes mellitus, acute idiopathic dysautonomia, acute disseminated encephalomyelitis, endotoxemia, hemolytic transfusion reaction, hemophagocytic syndrome, acute lymphoblastic leukemia, lower motor neuron syndrome, multiple myeloma (type of cancer), human T-cell lymphotrophic virus-1-associated myelopathy, nephritic syndrome, membranous nephropathy, euthyroid ophthalmopathy, opsoclonus-myoclonus, recurrent ear infections, paraneoplastic cerebellar degeneration, paraproteinemic neuropathy (abnormal functioning of the nerves), parvovirus infection (general), POEMS (polyneuropathy, organomegaly, endocrinopathy, M-protein, and skin changes) syndrome, progressive lumbosacral plexopathy, lyme radiculoneuritis, Rasmussen syndrome, Reiter syndrome, acute renal failure, thrombocytopenia (nonimmune), streptococcal toxic shock syndrome, veitis, Vogt-Koyanagi-Harada syndrome, solid organ transplantation, surgery, trauma, burns, and asthma.

    PRECAUTIONS
    Patients should tell their healthcare providers if they are taking any drugs (prescription or over-the-counter), herbs, or supplements because they may interact with treatment.
    Since intravenous immune globulin (IVIG) may cause kidney failure, it is especially important for patients to tell their healthcare providers if they are 65 years old or older or if they have ever had kidney disease, diabetes, sepsis, plasma cell disease ,or volume depletion. Patients should also tell their doctors if they are taking amikacin (Amikin), gentamicin (Jenamicin), streptomycin, or other drugs that can cause kidney damage. Patients who experience decreased urination, swelling of the legs or ankles, sudden weight gain, or shortness of breath should consult their healthcare providers immediately because these are common symptoms of kidney failure.
    Patients should tell their healthcare providers if they are allergic to any drugs.
    Patients who are pregnant, plan to become pregnant, or are breastfeeding should consult their healthcare providers before undergoing IVIG therapy.

    Patients should tell their healthcare providers if they have had received any live vaccines (vaccines that contain live viruses), such as measles, mumps, and rubella (MMR), in the last three months. These vaccines may be ineffective if IVIG is administered during this time.

    MONITORING IVIG USE
    Patients receiving intravenous immune globulin (IVIG) therapy should be closely monitored. During a physical examination, healthcare providers should obtain a complete medical history, including whether a patient has ever had liver or kidney disease or reactions to blood products or transfusions.
    Kidney function tests should be performed because there have been reports of kidney failure associated with IVIG.

    A complete blood count (CBC) should be conducted because patients who receive IVIG have a risk of developing hyperproteinemia (high levels of protein in the blood), increased serum viscosity and pseudohyponatremia (low levels of sodium in the blood), thrombosis (blood clots deep in the legs), transient serum sickness, transient neutropenia, or severe cutaneous vasculitis.
    Patients should be tested for hepatitis because there have been reports of hepatitis transmission through IVIG.
    Immunoglobulin levels should be tested to make sure the patient does not have IgA deficiency. Individuals who are IgA deficient should not receive IVIG because they may experience a severe allergic reaction called anaphylaxis.
    Rheumatoid and cryoglobulin levels should be tested because IVIG may cause blood disorders.
     
  10. muffin

    muffin Senior Member

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    HEAPSREAL: I went to the pharmacy site you noted in your post and had a look. Kind of worried about the injections, given that this is critical stuff. I think I would stick to what the doctors/hospitals gave me since you might have a better shot of getting the "good" stuff. This is made in the Ukraine and I really would wonder about the safety of any medical product coming from this country. Just me but when I saw where this stuff came from it did give me a start. Ukraine does not have the medical standards that we here in the US and in Europe require. Be careful with the online medical sites. I too have used them for various meds that I wanted but my doctor would NOT give me and I was a bit scared of the "unknowable unknowns" with any of this stuff. Just a heads-up. Use your own best judgment as usual.

    Immunoglobulin-human-normal inj. 10% #10

    Enlarge
    Price: $69.95 Category: immune system
    Price: $69.95
    Where made: Ukraine

    Buy

    Detail info about the product:

    Packing: solution for inj. 10 % 10 ampules 1.5 ml

    Human normal immunoglobulin (NIGH) refers to the antibodies in pooled plasma which, injected, can be used as a form of passive immunisation to boost the immunoglobulin G (IgG) of patients and therefore temporarily increase immunity against common infections.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I havent ordered anything injectablem fro them just put it up there as someone said it was expensive, can always work with your doctor and order it and get him to administer it. I order cycloferon from them which i think is basically a russian version of immunovir just alot cheaper.
     
  12. IntuneJune

    IntuneJune Senior Member

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    Muffin,

    Thank you for your concern.

    Think of PIDD as a raging fire. Just as the building would immediately burn down if the fire department did not come, PIDD, if left untreated, would do the patient in. Think of the story of the "bubble boy."

    Think of CFS/ME as a buried smoldering fire. The firemen check the building, don't find any problem, leave. The smoldering fire can do serious damage to the building, but at a much slower rate.

    Well, this may be a poor analogy, but in my fibrofog way, it's my attempt to explain the urgency of a primary immune deficiency.

    My insurance company stopped treatment, my immunologist fired off letters to the insurance company clearly stating they were putting my very life in danger withholding IVIG and this was life-threatening.

    Every infusion, Muffin, as I sit in that chair, I think of all the donors, first, to be grateful they did donate, then the fear creeps in. OMG, for the reasons you posted, but I must put out the larger fire first.

    June
     
  13. jenbooks

    jenbooks Guest

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    Actually you want more donors, not less. They do purify against pathogens. But the point is you will get a wide cross section of antibodies from all kinds of immune system exposures, and of hla subtypes. IVIG is good BECAUSE there is such a wide cross section.
     
  14. IntuneJune

    IntuneJune Senior Member

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    Jenbooks,

    Thanks. That will be a positive thought I can concentrate on while in the infusion chair for 2 1/2 to 3 hours.

    June
     
  15. muffin

    muffin Senior Member

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    Not in a million years would I want to damage ANYTHING that helps others

    If this therapy helps you than great - keep doing it. I really would never try to stop or disuade others from doing something that is medically considered appropraite and HELPS that person. So that is not why I put that info out there.

    I put that stuff out there since there was a discussion (that was locked) on blood and blood products. I went off and researched to see what all was in our blood and how it was used and was shocked at the info I found and did not know about. I was worried about some of those people who donate blood and don't know or do know what's wrong with them when they give blood. But, as someone noted, with so many people donating blood you do get a better, wider-spread immune coverage.

    I would never want anyone stopped from getting what they need to help them medically. Never, so let me make that clear. Just an FYI on the blood supply and the blood products I didn't know about and figured others might not know either. Info is power, remember.

    I do now what living in hell feels like so you have my sympathy. And if this therapy helps you feel better and up and out of Hell, well... keep going. I pray it continue to helps you.
     
  16. IntuneJune

    IntuneJune Senior Member

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    Muffin,

    Again, thank you for your concern. I also was shocked to learn one infusion is manufactured with SO MANY donors. It is scary. But in the case of PIDD, we basically have no choice. IVIG has been the standard treatment for PIDD for probably 40 years (well, don't hold me to that number exactly....)

    Had there been a member here who was recently diagnosed with PIDD, I did not want them to back away from IVIG treatment.

    You are absolutely correct "info is power" I agree with you whole heartedly and one of the reasons I love this place. There are so many members, you included, who are out there sharing information.

    I never doubted your motive to share your information. As you know, doctors do NOT give us all the information when embarking on a treatment. We have to "go fish" for ourselves. And I believe that was the service you were providing by posting. And now it is more frightening with the XMRV news to know I am receiving immunoglobulins from so many donors.

    Right now for me, IVIG is not helping with the CSF/FM symptoms as it had at first. Of course, maybe something else is going on. But is it not prescribed for CFS/FM, I was just getting an added benefit. It is however preventing pneumonia, bronchitis, etc.

    Thank you for your prayers, they are appreciated and please know I never doubted your intent.

    Peace, June
     

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