What is IVIG and How Does it Work?
IVIG (Intravenous Immunoglobulin) is a treatment sometimes used in Multiple Sclerosis (off label; meaning it is not FDA approved for use in Multiple Sclerosis like many other drugs used for treating MS) to basically change the way the immune system functions. Immunoglobulins are also known as antibodies, which the body uses to fight off foreign substances such as bacteria and viruses. IVIG contains antibodies from over 1,000 blood donors and is administered via an IV (intravenous) infusion. The hope is that this treatment (though how it works is not 100% certain) will strengthen various parts of the immune system while weakening others so it can better fight diseases such as Multiple Sclerosis. There is also some evidence that IVIG helps increase the reproduction of myelin in the central nervous system (CNS).
What is the goal of IVIG?
The goal of IVIG is to slow the progression of MS, reduce long-term disability, and reduce the number of symptoms associated with the disease (ultimately the same goal as any other DMD). Some studies seem to show that IVIG does help treat MS and some studies show that it does not; this difference in results is most likely do to inadequate testing (number of patients in a trial and length of time those patients are watched for example). As with most treatments for Multiple Sclerosis (and the many symptoms associated with the disease) what works for one may not work for another. Some people have great results with this treatment and others see no effects at all. One thing that is relatively agreed upon is that IVIG is meant to prevent a relapse and not treat one. This means that IVIG seems to have no effect on a relapse that is already occurring when compared to treating with Solumedrol or Prednisone.
Researching IVIG for MS
Though no large studies of the use of IVIG in Multiple Sclerosis have been conducted, there have been a number of smaller ones which present some interesting statistics. For example, one Austrian study (though small) compared the effects of IVIG versus a placebo in 148 patients over 2 years. This study showed a 59 percent reduction in the number of relapses in the treated group as well as a significant reduction in disability scores for patients taking IVIG. Those on the placebo presented with deteriorating disability scores. Likewise, a Danish study also showed that patients on IVIG showed fewer MRI lesions than patients on a placebo.
Some studies have even showed that IVIG can benefit those with Primary Progressive Multiple Sclerosis (PPMS) though there have not been any studies large enough to actually confirm these possible benefits. Regardless, the few documented results available definitely warrant more detailed testing.
How is IVIG given?
IVIG is typically given via an IV infusion about once every 4 to 6 weeks. Of course this can vary depending on your doctor’s orders because no official dosing information has been published regarding the use of IVIG for Multiple Sclerosis. The infusion itself can last up to 6 hours, which is why it is sometimes given at home instead of in an infusion center. Because IVIG is a naturally produced human product, it is generally well tolerated and free of side effects but you can never be too safe which is why it may be given with Benadryl until your reaction to the treatment is known.
Who is IVIG for?
IVIG is best used with patients who cannot tolerate typical DMDs (Disease Modifying Drugs) such as Copaxone, Rebif, Tysabri, or Gilenya. IVIG has also shown to be effective in preventing relapse after pregnancy, which is a very common occurrence.
Side effects of IVIG
Most (if any) side effects are generally not severe such as headache, fever, or joint pain which all respond to OTC (over the counter) painkillers such as Tylenol. A rash may also occur which usually responds to medication such as Benadryl.
Of course, every medication is not without its reports of more severe side effects, which in this case may include heart attack, stroke, pulmonary embolism, aseptic meningitis, and deep vein thrombosis. These are obviously rare occurrences.
Another risk (though also rare) is the possibility of infection beings transmitted from one of the many blood donors to the recipient of IVIG. There are, however, a great number of tests done to ensure this does not happen.
My experience with IVIG
I have personally taken IVIG in the past along with Tysabri and Acthar and though I can’t be certain of whether it positively affected me or not I can say that I had no side effects. The worst part of this treatment was trying to kill 6 hours while not falling asleep on Benadryl! Like any other treatment whose effectiveness is not well known, I can only say that (like every other drug for MS) it may work for some but not for all; if helps you than great! If not? Check it off the list! Either way the few statistics available are definitely hard to ignore.
How many specialists did you see before finding "The One"?