Managing CAD

When you have CAD, you need to be certain that you keep warm at all times. For some, anything cold entering your body could cause an autoimmune response resulting in red cell destruction.

DRESSING APPROPRIATELY IS THE FIRST LINE OF DEFENCE:

  • Wear warmer clothing summer and winter because air-conditioning is as much a problem as cold weather.
  • Don’t forget to dress warmly in your home too!
  • For outside, be prepared like a good scout.  Always carry a scarf, sweater or jacket and cover-up your extremities with gloves and socks.  Hats, headbands and/or scarves work well outdoors and in the air-conditioning and look nice for the gals.
  • Wearing 100% Silk long underwear is a wonderful option since it will keep you warm and won’t interfere with the fit of your clothes.
  • 100% silk glove liners are also helpful.
  • Outdoor clothing suppliers (Skiing, Camping & Hiking) likely have the best clothing options for staying warm. Some carry hand and foot warmers too.
  • GRAEME recommends New Zealand products of possum – wool and the merino – possum blends are extremely soft and light and they make lovely jerseys, gloves etc. To find suppliers, Google the words “New Zealand, possum wear, possum wool” and “merino possum blends“.
  • New Zealand also has a good range of sheepskin products available and Graeme can vouch for their calf-length boots. See the Mi Woollies range at  http://www.miwoollies.com
  • Australia is also a major producer of sheepskin footwear products so check PlanetShoes.com, Amazon, ShoeBuy, Overstock, L.L. Bean, Zappos, Ugg and others.
  • FRED recommends the LAMO and Acorn brands which are similar in quality, styles and features to some more expensive brands.

For patients with Raynaud’s go to: http://www.raynaudsgloves.com.

  • CLAIRE MORGAN from the Isle of  Man:
    For Chris we take a hot water bottle out with us which Chris places on his lap whist driving when its very cold and on longer journeys a flask of hot soup or tea is helpful…. and those emergency foil blankets available from camping stores are a good idea in the car or handbag. We find thin insulating layers best rather than one thick garment, easier to take off it you need to. Have seen some heated hats, gloves and footpads for shoes at Maplins electrical store (they have a web site), but not sure how effective they are.  We have tried the battery gloves but found them bulky and heavy when the batteries are in them. Finally a hot bowl of porridge in the morning is a good idea, and hot ginger punch helps on a cold day.
  • JUHI said:  In my case, I always had a hard time finding shoes that would keep my feet warm.  I had the opportunity to try and test a pair of the emu boots with sheep lining, and it worked.  For the first time, my toes are staying warm and not turning blue (most of the time).
  • ELSA mentioned electric boots: Contact www.columbia.com and check Footwear for Men and Women.


The boots are designed for winter sports enthusiasts, and as such are often just what CADdys are looking for. They look pretty snazzy to me.

“The boots have built-in rechargeable batteries and electronic controls that provide three temperature settings for maximum protection from the cold.
On the low setting, heating pads located under the ball of the foot deliver warmth for 8 hours; on high, expect 3 hours of heat where your foot needs it most. Rustproof alloy gaiters and convenient speedhooks hold the foot firmly in place for maximum stability during serious mountain trekking, snowmobiling, ski lift operation, or Arctic exploration. Combine these features with Bugathermo’s durability, waterproof construction and Omni-Grip® traction, and you may very well have the greatest winter boot to walk the earth.”

  • KAREN has advised that “cayenne pepper capsules” are great for keeping hands and feet warm.  You can get these in 40,000 units of heat and work up to 100,000 heat units. She said they are treated with a buffer so they won’t upset your stomach. they work wonderful, and she has used them for years during the winter months and they really do the trick!

BE CERTAIN NOTHING COLD TOUCHES YOU OR ENTERS YOUR BODY BY MOUTH OR INFUSION:

  • Try to do without ice.
  • No cold drinks. Instead of drinking cold water, try room temperature, warm, even hot water, it’s not so bad! BETTY
  • If you can’t live without ice cream, let it melt a bit.
  • Always use warm water when washing and also brushing teeth.
  • Avoid cold compresses

ALERT YOUR MEDICAL PROFESSIONALS

Remind all medical personnel that any and all procedures must be done under warm conditions – examinations, injections, transfusions, treatments, surgeries including open-heart.  If you need a transfusion, be certain that a blood-warmer is used, as this brings the blood up to 98.6 degrees Fahrenheit before it is infused into your body.  The transfusion apparatus may need to be warmed similarly….we have experienced red cells clumping in a cold needle because the cold agglutinins were activated.  No blood would then flow.

MAINTAIN A HEALTHY DIET AND GET PLENTY OF REST

  • Exercise is great for your body and your head but don’t overdo it.
  • Do everything in moderation and you can’t go wrong.
  • Listen to your body!

CADys have found different ways of monitoring the state of their blood. Obviously blood tests carried out by a Doctor are by far the best. However, in between these official blood tests we have heard of the following being used.

(1)  GRAEME found that his pulse was a very good indicator of my haemoglobin in between blood transfusions. As your haemoglobin falls, your heart will respond by beating harder to meet the demands of your body. You might be able to assess what your rate is when “good” and what it rises to when “bad”. In his case it dropped to about 70 after a transfusion, and rose to 90 by the time he needed another.

(2)  Another CADdy reported ” I have noticed also that the level of activity of the antibodies is reflected in my closed eyes. Something like the snow that you see on TV sets. The speed and size of the dots give me an indication of how cold I have been, eg, while sleeping.”

HANDLING OF BLOOD SPECIMENS PER NORWAY’S DOCTOR/RESEARCHER SIGBJORN BERENTSEN

“In theory, cooling of a blood sample should be acceptable provided it is used only for measuring hemoglobin and CBCs and is appropriately rewarmed before analysis. The explanation for this is that the cold agglutinin dissolves from the red cell surface on warming to 37-38 degrees C and the agglutination of cells will be reversed.

In practice, however, I too have occasionally been confronted with technical failures indicating that rewarming either did not work or had not been performed adequately.

Cooling during the analysis itself is a possible explanation in patients with high thermal amplitude CAs. In such cases, I would recommend handling of samples as for protein analysis (with the exception of centrifugation and removal of serum, of course) and running the analysis right away.

For protein analyses (CA-titer, IgM quantification, electrophoresis etc.) correct handling of samples is essential for reliable results. You will find a brief statement on this requirement in several papers, e.g. at page 366 (Table II) in our article in Hematology from 2007. (See our Links Page 2007 Primary CAD-an update.pdf).

In some more detail, these requirements can be described as follows

Vacutainers (sampling tubes) should be prewarmed.
After sampling they should be kept at 37-38 degrees C until serum is removed from the clot.”

Table II  –  Diagnosis of Primary CAD

CriteriaComments & Precautions
CriteriaChronic Hemolysis
Cold Agglutinin titer >= 64 at 4 degrees C
Typical DAT findings
Polyspecific DAT positive
Specific DAT positive for C3d
No malignant disease by clinical and radiological assessment
Specific DAT for IgG is usually, but not always, negative.
Procedures: blood and serumHemoglobin level and blood cell counts

Routine assessment for hemolysis DAT.
Specific DAT for C3d and IgG Cold Agglutinin (CA) titer at 4 degrees C.
Complement assessments (C3, C4 and CH50).
Electrophoresis with immunofixation.
Quantification of IgM, IgG and IgA.
Blood specimens for CA and immunoglobin analyses must be kept at 37 degrees C from sampling until serum has been removed from the clot. Immunofixation should be performed even if no monoclonal band is visible on electrophoresis.
Procedures: bone marrowTrephine biopsy ( including immunohistochemistry)
Flow cytometry of aspirate
Morphology and immunohistochemistry of trephine biopsies should be assessed by an experienced hemopathologist
RadiologyChest X-ray
Abdominal ultrasonography
Morphology and immunohistochemistry of trephine biopsies should be assessed by an experienced hemopathologist

 VACCINATIONS AND VITAMINS:

The medical professionals say that people with autoimmune conditions SHOULD NOT get inoculated with any live vaccines such as the Shingles Vaccine.

Everyone who is able, should get the annual flu vaccine which is a deadened virus.

Many doctors recommend taking Daily Folic Acid supplementation pending folate tests. They may also suggest taking Vitamin D3, following a test for deficiency. Dosages seem to vary among physicians.  Folic Acid helps build new blood cells.

Iron Supplementation may also be recommended but generally is not helpful for CAD Autoimmune Hemolytic Anemia unless Ferritin tests indicate deficiency.

ALWAYS CHECK WITH YOUR MEDICAL PROFESSIONALS REGARDING ALL VACCINATIONS, VITAMIN SUPPLEMENTS AND TESTS.

We suggest wearing a Medic Alert bracelet or necklace at all times  (See www.medicalert.org)

Keep in close touch with your doctor and get blood checks as directed.
Seriously consider moving to a warm climate if at all possible.

Please use the CONTACT US page to share your suggestions with us.

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