Intravenous gamma globulin, or IVIG, is time consuming, bothersome and costly, but for some patients it’s the only choice

An alternative to prednisone

Reprinted from Recovery, May 2004

Prednisone or other glucocorticosteroides are, by far, the preferred method used to control pemphigus and pemphigoid, but some patients cannot physically tolerate the drug or have an especially refractory (stubborn) case that require an alternative, or adjunctive treatment. Intravenous gamma globulin (IVIG) is an alternative often applied in such cases. The cost of IVIG is at least $10,000 per treatment.

Immunoglobulins is another word for antibody. They protect the body from bacterial, viral, and fungal pathogens (disease causing organisms.) The 5 types are designated IgM, IgE, IgA, and IgD, and IgG, which accounts for about 70% total in the blood.

The blood of literally thousands of people is purified in a vat and given to patients through a needle attached to a device that controls the rate of flow from a bag containing the blood. The antibodies in the blood usually control flares. For the best results, steroids and/or immunosuppressants are also applied if tolerated. The process takes several hours on successive days, and must be repeated periodically, or indefinitely, depending on the patient. Improvement is not expected until after at least 5 treatments.

IVIG is getting increased attention in research laboratories around the world. Dr. Suzanne Herzog of the University of Wurzburg in Wurzburg, Germany, published a study recently with results from 4 patients with refactory pemphigus vulgaris. All patients showed improvement with a decrease in autoantibodies in the blood using both immunofluorescent and ELISA tests. One patient was able to discontinue steroids and immunosuppressants after 12 infusions. New lesions formed eventually after the infusions were stopped, but 2 patients quickly improved again with retreatments. Results will vary, but there are no reports in the medical literature of patients recovering completely after using IVIG.

Dr. Terry McDonald, PPS Board Member, is a patient who cant tolerate prednisone. She is required to take IVIG treatments every 4 weeks to control her PV. It takes two successive days of infusions and 8 hours each day. (Most patients spread their treatment over two or more days.The number of days and hours required for patients will vary.)

I started in January 2002. Terry says. I get to the hospital about 7:30 AM. I wear comfortable clothes and always take a wrap in case the room is cold. I pack a small bag of things I might need.

For me it takes over an hour to get started. The staff takes vital signs regularly to monitor my progress closely. I stay pretty still during the process, but other patients move around more, pulling the monitor with them on a rolling stand. I have not had any bad side effects, but I do get a headache. Ive found that eating and taking something for the headaches ahead of time lessens the discomfort. The headache is gone the day after the treatment.

I get very thirsty during all this, which is not typical. I drink almost continually. Concentrating is difficult for me so I cant read as other patients do, but I can watch TV. The hospital usually provides meals for me and I can drive myself home afterwards; some patients prefer not to. I started seeing results in about 6 months. I also take Imuran.

If I could have taken the pred I would have because of all the time IVIG takes away from my work (as a Clinical Psychologist).

I did my homework before all this started and my doctor consulted with a couple of doctors familiar with IVIG and pemphigus, so I knew what to expect. That helped give me confidence. I believe that having a positive attitude really helps, too.

There are new formulations of IVIG that are thinner in consistency, so infusions take less time. Some patients complain of headaches or nausea, and some get a rash. In some cases the fatigue patients usually get from the older formulation is reduced or eliminated.

Some patients get IVIG treatments at home which is more comfortable and relaxing. This is a growing trend, but controversial because some patients and physicians have safety concerns if complications occur.

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