Alliance   For   Cryoglobulinemia

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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 cryos 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.

Welcome, whether you are a patient, caregiver, advocate or professional you are in the right place if you want to learn more about Cryoglobulinemia!  We offer current information about Cryo-Vasculitis, support groups, research opportunities and most importantly we strive to foster global relationships through the  “Alliance for Cryoglobulinemia”.   

The Alliance For Cryoglobulinemia is an inclusive network of patients, caregivers, family, medical professionals and Cryoglobulinemia Ambassadors dedicated to improving the quality of life for people with cryoglobulinemia. Our goal is to act as an international platform that links all efforts of cryoglobulinemia research, awareness, patient support and education.

We campaign for research and partner with patient centered research organizations such as:

 The Vasculitis Foundation                    The Vasculitis Patient Powered Research Network              The Vasculitis Clinical Research Consortium.  

 In keeping with our Research Goal,  the Alliance for Cryoglobulinemia has established a Cryoglobulinemia Research Fund at our partner organization, The Vasculitis Foundation.

The Alliance was founded by Marianne Vennitti and Eileen Propp, in 2012.

 

 

 

 

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 Join one of our Support Groups if you would like to meet others who have been diagnosed with Cryoglobulinemia or you know someone who is living with Cryo.    

 

 

 

Living with Cryo 

 Read and listen to testimonies of others who are 

“Living With Cryoglobulinemia”.

Patient Stories

 

 

 

Cryo Testing

 

Testing For Cryoglobulinemia is not easy!  

We are here to help educate you about the testing protocol.

 Patients Guide to Cryo Testing

 

 

 

 



What Is Cryoglobulinemia?


Cryoglobulinemia is a disease defined by the presence of cryoglobulins; which are proteins (also called immunoglobulins or antibodies) that become thick in cold temperatures. This process can restrict blood flow causing damage (vasculitis) to: skin, joints, muscles, nerves and/or organs. Cryoglobulins are antibodies.  Cryoglobulinemia, in the vast majority of patients occurs due to Hepatitis C (HCV).  Approximately 90 percent of people with cryo have it due to HCV. Cryoglobulinemia is part of a group of diseases called vasculitis — damage and inflammation of the blood vessels throughout the body. Vasculitis is an inflammation of the blood vessels (vascular = blood vessels, itis = inflammation). Vasculitis can occur as a main disease or as a complication of another disease. Vasculitis may happen as the result of an infection, a medicine, or another disease or condition.

Alliance for Cryoglobulinemia offers peer to peer information only. Please, contact your doctor for all medical advice and see our disclaimer.