Dr. Chee Chow was my rheumatologist for 22 years; from 1993 to 2015. His retirement was a loss for me personally but also for the cryoglobulinemia community. He over the years provided care for a significant number of rare disease patients. His kind, soft demeanor and intellect are sorely missed. As his retirement parting gift I gave him some cryoglobulinemia questions that I wanted him to answer. He gave me his permission to share his answers with The Alliance for Cryoglobulinemia community – check them out. I can’t think of a more fitting day to share his answers than Rare Disease Day February 29, 2016. Thank you Dr. Chow – I credit you with saving my life.
Dr. Chow ordered plasmapheresis for me when I was critically ill and not going to make it. I was on plasmapheresis for 7 years. He fought the system to get my treatments covered. When Rituximab came out – he was willing to consider it for me. I have now been on Rituximab for 9 years and have a medication managed remission that I never thought was possible. Thank you Dr. Chow for giving me a quality of life back after you saved me.
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?
- Look for underlying cause and treat that, if possible.
- 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?
- 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.