[Mid to late 1990’s]
What appeared initially for Marilyn, was simply an abnormal result on a blood test. An indicator that remained static and had little implication for several years. It initially had zero impact on her lifestyle.
A serious bout with an otherwise common, and fairly low key virus, seemed to trigger serious changes. Changes that seem to manifest themselves nearly overnight. Marilyn’s Cold Agglutinin Disease suddenly became more advanced and impacted her life in a more negative sense. It now impacted her work life, as well personal life. Her professional work life was really impacted, in various negative ways. Her lifestyle pleasures had to start being altered to protect her health.
After lots of testing doctors theorize in Marilyn’s case she is considered Primary CAD (Primary = Unknown Cause). She does not test positive for other things such as Lupus or Lymphoma.
A CAD that has an identifiable underlying condition such as an infection, certain cancers, etc., would be considered Secondary.
Marilyn did test positive for antibodies to a bacterial infection, Mycoplasma Pneumonia (Walking Pneumonia). Meaning she had it at one point during her life, but it was not active at the time.
Medical community evidence seems to indicate there is a correlation between having Mycoplasma Pneumonia at some point, and ending up with CAD. At least for some of the CAD population. But that is not the only suspected trigger in some patients.
Doctors do indicate some infections trigger CAD. CAD can even be temporary for some. It may surface while an infection is active, then go away. For others this disease is on going for life. Unfortunately if it continues, it has the potential of impacting ones lifestyle.
Over the years Marilyn’s CAD has progressed from something more simple and mild, to a more severe Cold Reactive disease. Manifesting further into visual physical indicators, and on to a more severe form of the disease. With increased sensitivity to even comfortable temperatures a normal person would enjoy.
With a diminished immune system she has experienced two very serious bouts with a fairly common virus (Parvo B19). A virus that affects nearly all the general population at one point in their lives. A high percentage of kids come down with it. For a healthy individual (non-CAD), the virus quickly passes with only minor symptoms. More of just an inconvenience for a day or two. More details on the specific virus is discussed further down this page.
In these two bouts, Marilyn’s Red Cell Production completely ceased for 7 to 10 days. Dropping her Red Blood Counts to alarmingly low levels (Severely Anemic) in a very short time span. Resulting in paramedics at the house, ambulance transport to hospital emergency room, lengthy ICU hospital stays, blood transfusions, endless testing, and lengthy follow-up.
Coming out of her first bout . Marilyn even agreed to subject herself to an experimental therapy at the time. (Experimental for CAD patients). In hopes of putting her CAD in remission or at least lessening its impact. This therapy involved a product called Rituxan.
Marilyn agreed to take the series of IV Infusions of Rituxan. Though some commonly refer to Rituxan as Chemotherapy, it is actually a type of Antibody Therapy. More specifically, Monoclonal Antibodies. An infused therapy of multiple doses spread over weeks. It does not come without risks. The “black box” warning the drug company has to publish, is a scary thing to read, when making the decision to put that in your body.
Unfortunately Rituxan had little to no benefit in Marilyn’s case. The costs passed on to our insurance company, or through our insurance company, were also staggering. In hindsight we often think she should have taken a way less aggressive approach at the time. But hindsight it a great thing.
We do note here that through the years some CAD contacts have reported that Rituxan does benefit them. Like many things concerning CAD, nothing seems consistent from patient to patient. There are always two sides to any story. A decision to use any from of treatment ultimately falls to the patient, or legal care giver.
We theorized this Rituxan therapy may have unfortunately caused Marilyn’s second bout  with the same virus she had five years previous. When we say “we”, it was not “just the two of us” of course. A patient doesn’t have the power to suggest, or prescribe medical treatment. We base this what we were told at the time by medical professionals.
In her case a virus that an individual is only supposed to be affected by once. One that your body is suppose to create antibodies for and protect you the remainder of your life. Rituxan may have stripped away the antibodies that should have been created during the first bout of Parvo B19. This is a separate subject in itself. See: Parvo B19 Virus – Marilyn’s case (Also called the “Fifth Disease” or “Slap Cheek Rash”)
Fast forward some years [2010-2021]. Marilyn has become so “Cold Reactive” she has to avoid things like, drinking cold or iced drinks. Or eating cold or iced foods. Not swimming in a pool, or having any type of skin exposure to even moderately cool temperatures. Labs couldn’t get an accurate CBC/RBC even using strict warming techniques. She had to go to a specific facility that would do a Saline/Plasma Replacement Technique, that most CADs have never even heard of.
Our house temperature has been upped over the years from the low seventies (Fahrenheit), to now 79°F year round. We feel fortunate we live in a warm climate (Las Vegas, Nevada USA).
Her work place environment that involved air conditioning & heating she could not regulate to her tolerance. Caused her numerous spells of eventually becoming severely anemic. To the point she would have to be signed out of work, for months at a time. After 4 or 5 years of this work place issue, she explored filing for a disability. That seemed far fetched at the time
She decided to retire early at 60. (didn’t finish pursuing a disability that would have benefited her financially if approved).
Her health and blood results improved somewhat once she was able to control her environment, to her own needs 100% of the time. But she was still plagued with CAD. CBC/RBC tests continued to be a real source of frustration dealing with labs, repeating all the info about CAD….
It has been a roller coaster of life events. Emergency Room visits, Hospital Stays, Blood Transfusions, endless Blood Tests, endless Doctor visits. Even dropping Doctors that seemed uninformed, unprepared or unsympathetic. Trips to Scripps Clinic in La Jolla California, for more expertise and answers. Antibody/Rituxan Therapy, Bone Marrow Tests, IVIG Therapy, and much more.
Marilyn was Diagnosed with Breast Cancer (HER2),
Chemo-Taxol & Herceptin Started
Chemo Taxol ended
If you think CAD is hard dealing with, Cancer is worse. The last two years put CAD to shame. CAD at the same time, made all the Cancer blood testing a real chore.
We noticed the winter of 2021-2022. That Marilyn was not reacting to cold temperature. Normally she would have visible physical indicators such as a discolored nose or fingers.
At first we didn’t notice it. Then really paid attention. She also found that during periodic blood testing for her Cancer follow up visits. The labs didn’t seem to struggle getting her CBC/RBC to result. For a decade this was an issue. We have outlined in other places on this site and associated FB group. Her Hgb had come up into the normal range too.
We requested a CBC/RBC (to check Hgb which is normally low), Retic (which has been high for 2 decades), and a Cold Agglutinin Titer, (which also has had extremely high Titer number for a long time).
Her Hgb came back in the high normal range, her Retic came back in the normal range, and her Titer came back 1:256. While that Titer is still positive, it hasn’t been that low since perhaps 2000?
This can’t be explained by either her Hematologist treating her CAD all these years, or her Oncologist treating her cancer. There is no further investigative testing going on. Just a wait and see approach.
This may or may not be only a temporary reprieve from her CAD?
The only other unknown wild card, in this recent time frame, is Marilyn has had (4) Pfizer Covid vaccinations.
For now, after 22 years, she is enjoying being outside in cooler weather that she has had to avoid for many years.
[November – December 2022]
Though fully Covid vaccinated, even at an acceleration time interval. The last few days of November 2022 Marilyn had minor symptoms of Covid and started testing Positive. Upper respiratory type issues. Treated with Zithromax and Prednisone. An IV in the hospital for dehydration. Also prescribed Paxlovid, which she never took. She tested Positive for 18 straight days. Then started testing negative.
She completely lost her sense of smell during Covid. It appears it will be long term?
Winter of 2022-2023 Marilyn had little trouble with the cold. No notable events of Hemolysis, or low Hgb during frequent RBC/CBC tests.
Marilyns latest Hgb is in the normal range. Her Reticulocyte Count is in the normal range. Her latest Titer is trending up. Now at 1:1024.
Skin discoloration, specifically her nose. Which normally darkens quickly with a cold exposure. Was non-existent over the winter. No physical evidence up to this point in the middle of the warm months of summer.
Her sense of smell (Covid 2022 related) has not completely returned to normal. Though it has improved.
Neither of us are medical professionals. None of our information should supersede professional advice.
We only hope to offer what information we have learned over the years in layman terms.
With a goal of helping you gather information while pointing you in the right direction. At the same time providing a platform to share your own information or experiences, with other Cold Agglutinin Disease Patients. Aiding all in increasing their arsenal of information to help cope with this disease. To prepare you for some of the unexpected issues you may encounter along the way. To alert you to emerging treatment options.
At some future point we can only hope main stream medicine gets more involved and more educated on this disease. To the point they change and standardize testing protocols, research, and treatments. And to hopefully come up with some type of cure, rather than treatments that are not permeant.
Our Personal journey with Cold Agglutinin Disease. A more in depth look at a life with CAD.