I was just informed I have CAD. Now What?

I have CAD.  Now what?  Bear in mind this is from observation of one CAD person over a 20 year period.   But also from some compiled information from other CADs.  This is not coming from a medical professional.  Throughout our webpages we will help point you to other factual or observed information. 

Just What is Cold Agglutinin Disease?

In a nutshell a CAD patient has autoimmune issues that affects the premature die-off cycle of red blood cells, and the production of replacement Red Blood Cells.  All of which can result in varying degrees of anemia (lowered Red Blood Cell Count). 

Anemia levels are often related to the patient being exposed to cold or cooler temperatures.  Exposures that can be a long exposure, or an accumulation of a series of shorter exposures.  Exposures can be air related and or food/beverage related.

It takes blood tests to confirm you truly have Cold Agglutinin Disease.  Don’t just assume you have CAD, based on other conditions that may mimic some of the symptoms.

In a healthy body, normal red cell die off and replacement is properly regulated and kept in balance.

In a CAD, the balance slips due to varying factors. Causing the red blood cell count to go lower than normal (the patient becomes anemic).

Red cells in your blood, carry the oxygen from your lungs, to your organs and muscles.  Should your red count go lower than normal, your body compensates to keep the supply of oxygen constant, by the heart pumping faster to circulate the blood faster.

As anemic conditions surface, the CAD may experience symptoms of an elevated pulse, headaches, shortness of breathe, fatigue, dizziness, confusion, and more.

It is highly recommended you find a Hematologist doctor, that is familiar with CAD.  It would be wise to identify you are truly dealing with CAD and not something that mimics some of the symptoms. 

It would also be wise to eliminate the possibility CAD is a precursor to some other underlying issue you may need treatments for.   Especially the onset of Lupus, Lymphoma, etc.   Some of this testing not only requires Blood tests, but also Bone Marrow Biopsies. 

If nothing else, get yourself established with a Hematologist from the onset. More than likely at some point in your life, now having CAD, this may become a necessity anyway.

In some cases CAD is brought on by some type of infection or secondary illness.  It may never go away after you recover from the secondary illness.  A small amount of CAD’s may only experience the CAD issue on a temporary basis.

You will want to know:

Do you truly know (confirmed via blood testing) you have Cold Agglutinin Disease?   There are other conditions that mimic some of the physical symptoms.

Is this just a number on a blood test that is not impacting me physically?

Should I seek additional testing?  For things like my bodies Retic Rate (Replacement of Red Cells). 

Is this serious enough, that I am considered Cold reactive and it will do  damage to me if I ignore it?

Do I need to start observing physical signs so I can become proactive?

Are lifestyle changes required to protect my health?

Is medical/treatment or intervention needed beyond lifestyle changes?

In addition to CAD (COLD Agglutinin Disease) there is also WARM reacting auto antibodies. Those often show up, out of normal ranges, in blood testing when COLD is identified.

There are additional tests to eliminate or identify other impacting causes.  Or to establish baseline results, or severity.  Most recommend a Bone Marrow Biopsy. 

Not to discount people with WARM issues. We just don’t know much about the warm side of things. No WARM knowledge we can share in this document. While Marilyn tests positive for both COLD and WARM. She has not had to deal with anything having to do with WARM.

There are supplements such as Iron & Folic Acid. Vit D, Vitamin B-12 injections, etc. Many CADs report these help them maintain their general health and blood levels. This of course should all be supervised and prescribed by a medical professional. In doing so, they may require additional blood testing panels be run to identify current levels, or deficiencies.  Also used in conjunction with staying warm at all times.

In more severe cases, (more reactive to the cold), a CADs lifestyle, or quality of life is impacted. Many CADs (under doctor supervision) agree to take additional steps in the form of various, Lifestyle changes, “Infused Antibody Therapy” treatments, or Chemotherapy like treatments.

One such popular Chemo like treatment (truly not Chemo) is “Rituxan” [Rituximab]. There are various others treatments in clinical trials and experimental type treatments.  It is also being administered in conjunction with other therapies.

Bear in mind there is no “Silver Bullet” that has been found to eliminate CAD.  Some CADs report positive results achieved with lifestyle changes, or medical intervention.

Other CADs going through the same medical treatments  or precautions.  Then report no positive results, and some even have negative side effects.

There are also considerable risks to be assumed with any treatment. There is an important balance to weigh, concerning benefit over risk. That is certainly a personal choice based on what “facts” you may be given, or can dig up.

Even if you take a “wait and see approach” you may want to do that a little more aggressively that sitting back and simply doing nothing.

Have periodic blood tests for CBC/RBC to monitor your hemoglobin/Red Cell levels. This is more important if you are CAD/Cold reactive.   Annually, Quarterly, Monthly?  More frequent in colder months?  Each CAD is different and unique concerning their health, CAD reactivity, and what may be required as a form of anemia prevention or treatment.

Make sure you are not going anemic. It is good to know, and have your baseline documented when you are well.   Keep copies for your own records.  If you suspect at any time you have symptoms of becoming anemic get a CBC/RBC blood test done as soon as possible.  If you are experiences severe symptoms get yourself to an emergency room or medical facility immediately.

Our doctor did a lot of other screening once CAD popped up in blood work. Additional screening was done to eliminate other serious possibilities. Such as Lymphoma, Waldenstrom, Reynaulds, etc. Some of these tests require a bone marrow test.

Some CADs are at a stage they may not be cold reactive. Testing may have just picked up CAD indicators on a routine blood test? You may be a lucky one and aren’t showing physical signs, or negative impacts to your health or Hemoglobin/Red Blood test results? You may be able to function just fine without lifestyle changes?  But be aware that can change at any time. 

Your CAD severity level may remain static, or not, as the years pass?  It quite possibly could be temporary?  But mostly not.

If you know you are reactive to the cold. As in, having notable physical symptoms you can visually observe. The below info may help?

Visual Physical Indicators for CADs and their loved ones to watch for

There are some physical indicators that may help you.  More so if you are reactive, or highly reactive to the cold. Things you can monitor when you can’t run to the Dr on a moments notice. When waiting more time for blood test results may cause more serious medical issues.  Or when scheduling a Dr appointment for a problem in which the next available appointment ends up too far out into the future.

For some, the 3 observations listed might help you make a decision to go to the ER of a hospital, or wait it out?   For others without the luxury of medical insurance to cover expensive testing, the below 3 guides may be helpful in making choices that have financial repercussions?  But be aware things other than CAD can mimic the same symptoms. Seek professional medical attention when necessary, or when in doubt.

With my wife we watch for the following 3 stages. This is based on dealing with her CAD over 20 years. Also watching it morph from pretty minor in the beginning. To severe 20 years later. It has been a long and difficult journey between those two points in time. But our mental health is better knowing what to expect. Things that seem to repeat in cycles nearly every year. Especially in the cold weather seasons.

Long term affects of constant or accumulative exposures and reactions in the form of Hemolysis may lead to organ damage,  Neuropathy, and who knows what else. 

Marilyn is 60 years old (2019), and has dealt with CAD about 20 years.  She is not diabetic.  But she has started noticing Neuropathy in her fingers.  Over the years with CAD I have often seen her fingers turn blue due to cool/cold exposures.  We feel the Neuropathy is related.

Stage #1 Minor but needs to be eliminated. Don’t keep repeating it! Short term with consecutive reactions, may cause accumulative harm. In the form of a lowered Red Blood Count.  Long term it may cause issues later in life? You need to identify the trigger and make lifestyle changes.

Stage #2 Definitely a problem. This is most likely causing immediate harm and perhaps longer term issues? You need to identify the trigger and make lifestyle changes.

Stage #3 May indicate a blood test needs performed as soon as possible and/or need to seek professional medical attention as soon as possible. In the case of my wife, she has standing blood test orders from her Dr. She can go on her own to the hospital as an out patient for blood testing, at any time. Basically the Dr supplied her with a stack of signed blood testing forms that are already filled in for specific tests.

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Stage #1 Observation
Darkening nose, toes, fingers, tongue/lips exposed to external cool/cold air, water, etc.  Or to exposures to internally taken cold foods, drinks, etc.  While this darkening normally starts on an extremity.  It can appear on any skin area in general. This can also appear as spots, rash, or hive like reactions that appear related to cold exposure.

Darkening is an indicator your blood is reacting to cold temps. This is the beginning of Hemolysis because your blood is clumping, or thickening because of your Agglutinin level and the fact it is cold reactive. [If this is CAD related]. You need to reverse cold exposure as soon as possible, and warm the affected area.  Prevention 100% of the time is better than trying to react to this after the exposure.

You can’t approach this from the point, “since it doesn’t hurt or feel uncomfortable, I can just warm up my nose or my fingers in a little while”.

Early on, my wife didn’t know she was CAD and cold reactive. We noticed her nose and fingers turned slightly dark in the cold. She often continued on. There was no pain. After all, life, jobs, etc all demand things too. Fast forward 20 years with CAD and around 60 years old, she is showing signs of neuropathy in her fingers and toes. She is not diabetic.

Stage #2 Observation
Urine turning dark [Brownish not Red].  Stage 1 symptoms may be present or was recently present.

Dark urine [more of a brown, not red] could indicate your body is processing more than a normal amount of dead red blood cells. [Hemolysis]. Often in a CAD that is reactive, this follows exposures to cold that your body can’t handle. You need to avoid whatever triggered this! ….at all costs. For your urine to turn darker than normal, your cold exposure was too long. The dark urine may mean you may have lowered your blood count.

Hemolysis is also hard on your organs.

Dark urine often follows within an hour or two of the exposure event….Again…if this is CAD related.

Drink plenty of fluids to flush yourself. If dark urine continues, [more of a brown, not red] seek medical attention. It should go away the next time or two you have to urinate. Even if it goes away, you need to take personal preventative action to avoid this trigger/cause in the future.

If this happens you need to retrace your time line and try to identify the trigger. For highly cold reactive people this can be something as simple as eating ice cream or downing an iced drink. Whatever the trigger is, you need to adjust your lifestyle to eliminate that trigger in the future.

Stage #3 Observation
Whites of eyes becoming opaquely white.  Also stage 1 & 2 symptoms may still be present, or present recently.

With no signs of even very fine blood vessels. One of your loved ones should know how the whites of you eyes look when you are normal. Then help you monitor yourself.

This can happen without the prior 2 physical signs ever showing up. More in the case of perhaps a virus exposure? Since CADs have a compromised immune system.  This “opaque eye white” symptom may come on with or without a lesser cold exposure warning.

You can pull your lower lid slightly down and roll the eye up some, to take a visual look. You should see a normal eye. Normal for you.

Lack of any small visible blood vessels in the whites of your eyes, especially the outer perimeter, may indicate you are becoming severely anemic. This symptom is very obvious if you have paid attention to your eyes when you are well. Falling Hemoglobin and severe anemia can lead to requiring blood transfusions.  If you are in this stage other symptoms are most likely present.  Tired, Headache, Scalp tingles or feels weird, short of breath, elevate pulse rate, or you pass out.

In my wife I have seen this twice. On both occasions her blood count was so low she was admitted to ICU and given multiple units of blood. On both occasions she was dealing with a virus, not a cold exposure. But the virus was triggering a shut down of her bone marrow/red cell production. Her Retic count should have been rising as her red count was going lower (going anemic). In her case her “Retic Count” was going down as well as her Hemoglobin/Red cells going lower. Not only were her Red Cells dying off, they weren’t being replaced.

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Further NOTES:
Bone Marrow/Red Cell Production, is measured via a blood test [“Retic” or Reticulocyte Count] Another blood test term to familiarize yourself with. You will see comments about it in FB Group posts.

CADs with Hemoglobin/Red Cell levels that are falling, or have lower than the “normal” range. Those CADs often report headaches, no energy, body aches.

If you are cold reactive you will learn with time that any long period of time feeling like tired. dragging, extended time with a headache, this may require you to seek medical attention. Or at a minimum a blood test to check your Hemoglobin/Red Cell blood count, and perhaps your Retic.

This is where your baseline blood test, recorded when well, or reviewing a series of results you have kept, come in handy. If you have been taking monthly or quarterly blood tests you can see for yourself if you are stable, or in a falling state. Things to help you decide if this is serious enough to have someone take you to the hospital.

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