This is a very early head’s up.  Things are moving so fast that sometimes I have to alert you with information that might be a little bit premature.  Please take that into account as you read this alert.

Immune Thrombocytopenia

If you have been around the CLL scene for a bit, you have probably heard of ITP (Immune ThrombocytoPenia).  This, along with AIHA (AutoImmune Hemolytic Anemia) are the two major autoimmune diseases that CLL patients may experience.

Autoimmune disease is defined as destruction of perfectly good cell types in the body by an immune system gone berserk.  Think of it as troops killed by friendly fire.  In the case of ITP,  patient’s own immune system attacks platelets in the blood.  In AIHA the target of attack is red blood cells.  In both cases, the attack kills perfectly functioning cells, causing serious damage.  If you have become a bit rusty about these two dangerous side effects of CLL, here are a couple of links to refresh your understanding.

Platelets are critical components of our blood, their main function being helping blood clot  Without platelets, every little cut will keep bleeding, leading to massive blood loss.  People without sufficient platelets bruise easily (under the skin bleeding), may have GI tract bleeding that causes loss of blood and tarry stools.  Younger women may have very heavy menstrual bleeding.  Even more dangerous, low platelets may cause bleeding in the brain – not something you want to risk.

Over the last couple of days I have come across several early stage articles about a few patients who developed severe and rapid onset ITP within a day of getting the COVID-19 vaccine.  

Both articles are available for reading right now. I hope they don’t disappear behind a paywall in the next few days.

To cut to the chase, a very few number of patients developed seriously low platelet counts immediately after getting their COVID-19 vaccine.  There does not seem to be a distinction between Moderna and Pfizer vaccines.  In both cases, the percentage of patients getting this adverse reaction is very small.  While we do not have a lot of cases to study, it is nevertheless an important adverse effect.  Physicians caring for the patients felt that there was good chance the drop in platelet counts was NOT (repeat, NOT) a coincidence, that there is reasonable grounds to believe the ITP was caused by the vaccine shot.  They further opined that the patients probably had an underlying propensity for autoimmune disease related to platelets.  Huh?!  Sounds like anyone you know?

What raised the information to “Alert” level red flag for me is that over the last couple of weeks I have received personal emails from two of our readers that documented very similar cases.  Both patients are long term CLL cases, both have been through a couple of rounds of therapy for CLL, one is on maintenance Ibrutinib therapy.  Both had no prior history of ITP.  Both had recent blood work prior to the vaccination that showed healthy levels of platelet counts.  The day after the vaccine shot,  both patients were hospitalized with extremely low platelet counts – in the range of 0-5 counts.  Folks, that is dangerously low!!  Dangerous as in immediate hospitalization required, confined to their beds until the situation stabilized.  A simple fall could cause massive internal bleeding and possible death.  Both patients were treated with prednisone (to bring the out of control immune response under some level of control), both were given platelet transfusions.  Will this unexpected autoimmune reaction subside in a couple of days?  We do not know.  

I do not believe ignorance of potential risk factors helps any of us, especially folks like our guys fighting multiple wars at the same time.  Even with this very skimpy amount of information, I believe this is an adverse effect that may be more important to CLL patients than to the general public.  There is no doubt that CLL patients are more prone to autoimmune disease, especially autoimmune destruction of platelets (and red blood cells).

What to do?

Get the vaccine.  I do not believe we have any other choice.

But, after you get the vaccine shot, keep a very close watch on symptoms of something untoward happening.  Here are the tell-tale signs of autoimmune thrombocytopenia:

  • Petechiae are pinpoint, round spots that appear on the skin as a result of bleeding. The bleeding causes the petechiae to appear red, brown or purple. Petechiae commonly appear in clusters and may look like a rash. Usually flat to the touch, petechiae don’t lose color when you press on them.
  • Bruising.  We all bump into things and as we get older and our skin becomes thinner, we bruise a bit more.  But people with low platelet counts bruise far more than normal.  If you suddenly start seeing bruises on your arms, legs, and other parts of your body, please take note.
  • Gastric bleeding.  I have very high stomach acidity and over decades I have developed ulcers.  If I take blood thinners such as aspirin or NSAID drugs (Advil, Motrin etc), I start bleeding and barfing blood (looks like coffee grounds).  Over the next day or two my stools start looking very dark and tarry.  Basically, GI tract bleeding due to inadequate blood clotting.  Blood thinners can do it, precipitous drop in platelet counts can do it.

If you see any of these symptoms, call your oncologist, report the situation, then get yourself to the Emergency Room.  I am not kidding.  Uncontrolled and crashing platelet counts can kill you if the bleeding happens in the brain, for example.  When you get to the ER, ask them to do a simple blood test, the usual CBC that you guys are familiar with.  How are the platelet counts holding up?  You might want to take your prior blood work results with you to the ER, so that they can compare platelet counts before and after the vaccine shot. And keep your fingers crossed.

In the meantime, please see if you can bring this subject up with your CLL expert contacts – I would like to hear their take on this subject.  

Be well,