Cryoglobulinemia Home Page

by Lee Altenberg


Note to physicians: If you have a patient with severe symptoms from cryoglobulinemia, and plasma exchange has been ineffective in producing an improvement, cryofiltration may be the treatment of choice. It is possible to set up cryofiltration at any facility that performs plasmpheresis (with a Kobe device). The only required equipment is a refrigerator that maintains 3°C to 5°C, a frame to hold the cryofilters, the proper tubing set, and the filters, which can be made to order. The apheresis nurses can be trained in the procedure. No particular approval from the FDA is necessary, just approval from the institution's Board. If you wish to pursue this, send an e-mail to @dynamics.org.

Some new links:


This Web site has been created as a central communication hub for people with cryoglobulinemia. The main information resources I have placed here are:

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What is Cryoglobulinemia?

From the Mayo Health Oasis Library Resources:
"The term cryoglobulinemia indicates the presence of cryoglobulins in the blood. These are abnormal forms of protein molecules that precipitate at cold temperatures and redissolve at normal body temperature. Hence, when a person with cryoglobulinemia is exposed to cold, he or she may experience impaired circulation in the small blood vessels. This may lead to color changes in the skin, hives, damage to the extremities, bleeding into the skin (purpura), and other problems. The underlying cause of this very rare condition may include diseases of the immune system [e.g. Waldstrom's macroglobulinemia], of certain cells in the bone marrow [e.g. monoclonal gammopathy of undetermined significance (MGUS) or its malignant form, multiple myeloma], and some infectious diseases [e.g. hepatitis C virus]. The diagnosis depends on demonstrating the presence of cryoglobulins in the blood and searching for a possible underlying cause." [notes added]

Cryofiltration

While looking for treatments for a family member with cryoglobulinemia, I found that there is a treatment, cryofiltration, which has proven extremely effective in ameliorating the complications resulting from cryoglobulinemia such as organ damage and skin ulcers.

Cryofiltration is a simple addition to plasmapheresis: after the patient's plasma is separated from the blood cells by plasmapheresis, the plasma is chilled in a refrigerated chamber until the cryoglobulins precipitate out of the plasma. The precipitated cryoglobulins are filtered out by the cryofilter. The filtered plasma is warmed, recombined with the blood cells, and returned in the patient's vein.

In plasma exchange, in contrast, the patient's withdrawn plasma is thrown away, and replaced with saline water plus pooled human albumin protein. The loss of important plasma components such as immunoglobulins, and the high cost of albumin and the possible risk of contamination, make plasmapheresis a less-than-optimal treatment.

Cryofiltration is an "orphan device" undergoing clinical trials at Vanderbilt University Medical Center. This is the only place in the world to refer a patient for cryofiltration. Dr. Ghodrat Siami, M.D. is directing the tests. Dr. Siami has no involvement with the Cryoglobulinemia Home Page Web site. Interested patients may have their physicians contact Dr. Siami through his assistant, Flora Siami Flora.Siami@mcmail.vanderbilt.edu, 615-321-6338, Fax: 615-321-6316.
The cryofilter and tubing before use [top], and after collecting cryoglobulins from the plasma [bottom].


Hawaii is an ideal place for cryoglobulinemics to live because the minimum temperature is never cold. If you would like to help bring cryofiltration to widespread availability, or if you would like to exchange other information supportive to cryoglobulinemics, please send an e-mail to Lee Altenberg, Ph.D. @dynamics.org.


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Updated February 26, 2013