Cryoglobulinemia Frequently Asked Questions. (FAQ)

Frequently Asked Questions By Patients.

What type of doctors can help me?

Cryoglobulinemia can affect many areas of the body. People with cryoglobulinemia are treated by rheumatologists, dermatologists, hematologist/oncologists, ophthalmologist, nephrologists, neurologists, and cardiologists. Your principal physician will vary depending on your dominant symptoms and the healthcare system you utilize.

Can cryoglobulinemia be associated with other diseases?

Yes, cryoglobulinemia is predominately be associated with other diseases.  The vast majority of the time cryo is associated with Hepatitis C (HCV). In other cases, it can be associated with Leukemia, Multiple Myeloma, macroglobulinemia, Rheumatoid arthritis, Systemic lupus erythematosus or monoclonal gammopathy.  Essential Mixed Cryoglobulinemia (EMC) is when there is no specified disease that caused the cryoglobulinemia.  EMC is the rarest form of cryoglobulinemia.

What is essential mixed cryoglobulinemia?

When the cryoglobulin proteins are a mixture of various antibody types, and forming for unknown reasons (essential), the conditions is referred to as essential mixed cryoglobulinemia. Essential mixed cryoglobulinemia is characterized by joint pains and swelling (arthritis), enlargement of the spleen, skin vasculitis with purplish patches, and nerve and kidney disease.

How do I get an accurate cryoglobulinemia test?

What are additional tests that my doctor should run for underlying diseases?

  • Check for lupus antibodies, check for ANA, check for anti-pr-3, rheumatoid factor, and a rheumatoid panel. Basic checks include a full metabolic panel, a CBC, urinalysis, ESR, and non-cardiac CRP.
  • Cryo is really rare, but one can also check for cryoglobulins (qualitative).
  • Look for indications of an inflammatory process. If it appears to be autoimmune, check for crazy stuff like Lyme disease, HIV as well as Hep-A, B, C antibodies. Additionally, the Hep-C might be followed with a Hep-C RNA test (expensive) if the antibody test comes back negative.
  • Check for crazy stuff like metals, silica, and crazy toxicity if all else fails. 

Frequently Asked Questions about Cryoglobulinemia:

By Chee Chow, M.D.

Dr. Chee Chow graduated from Yale University School of Medicine in 1981. He was an internal medicine specialist and a rheumatologist.  His internal Medicine training was conducted at Kaiser Foundation Hospital Los Angeles. His Rheumatology training was conducted in Los Angeles County, University of Southern California Medical Center.  He retired from Kaiser Permanente Oakland Medical Center in 2015 with 34 years experience.

Dr. Chow was Eileen Propp’s rheumatologist from 1993 – 2015.  Eileen credits Dr. Chow with saving her life.

Can you explain cryoglobulinemia in language a new patient would understand?  

  • It is an autoimmune disease; the immune system makes abnormal antibodies that block circulation when it’s cold, and also cause tissue inflammation.

Why is it important that cryo patients stay warm?

  • To keep the antibodies dissolved, so that they don’t compromise blood circulation.

How do you explain to patients what it means to ‘stay warm’?

  • Individuals cryoglobulins cause trouble at temperatures specific for each individual patient.  Stay (as much as possible) above the temperature that affects you.  It may be higher than it is for another patient.

Do you advise patients with cryoglobulinemia due to Hepatitis C to stay warm?  

  • Yes – note the temperature at which you start to feel symptoms and keep warmer than that temperature.

How has Rituximab changed treatment and outcomes for patients with cryo?  

  • By depleting the B cells which produce antibodies (including antibodies), Rituximab has greatly helped my patients with cryoglobulinemia.

Many patients report that their doctor tells them that if the test is negative then they are in remission.  Why do you rely on symptoms to treat cryoglobulinemia rather than the blood test?  

  • Symptoms such as foot drop or vasculitic skin sores show that cryos are present and causing inflammation.  The test for cryos may not detect the cryos – each test is limited technically and is also affected by handling.

Many patients see their vials left on the counter as opposed to directly into the heat block/bath. How can patients advocate for themselves when doing a cryoglobulinemia blood test?

  • Ask the blood draw tech to place the red-top tube into a 37-degree heating block so that the blood can clot at body temperature.   Otherwise, the test will show a negative result even when cryos are present.

The causes of cryoglobulinemia are varied (Cancer, autoimmune, viral/infection and idiopathic).  How do treatments vary accordingly?  

  • Treat the underlying when possible, and that can decrease cryoglobulins. For example, there is now a good treatment/cure for Hepatitis C.

The treatment for HCV has made significant progress in the last several years.  Does the cryoglobulinemia tend to remit in patients who have cleared HCV?

  • Too soon to say from my experience.

For patients with essential cryoglobulinemia do you notice a stronger reaction to cold?  

  • I have not noticed a stronger reaction.  One of my patients most sensitive to cold was a carrier for Hepatitis B.

What do you think is important for cryoglobulinemia patients to know about their disease?

  1. Look for underlying cause and treat that, if possible.
  2. Manifestations vary widely from one person to another. Some people with cryoglobulinemia have no clinical manifestations at all and need no treatment.

What do you think doctors need to know about cryoglobulinemia patients?

  1. See 1 and 2 above.  Keeping warm often is not enough.  Immune suppression decreases cryo production and is justified for significant tissue inflammation e.g. vasculitis.

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