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.
- CLL Topics: ITP — Idiopathic Thromocytopenia Purpura, a Complication in CLL
- CLL Topics: AIHA — Auto Immune Hemolytic Anemia
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.
- A Few Covid Vaccine Recipients Developed a Rare Blood Disorder – NYTimes
- A Small Number of People Developed This Rare Blood Disorder After Getting a COVID Vaccine—Here’s What to Know
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,
Chaya
14 comments on "Bleeding problems – after COVID-19 vaccine shot"
Nice illustrations. The “bleeding hearts” are especially apropos. And the snow drops are just starting to bloom here in my garden in northern CA. Thanks for this very early heads up. I recently (yesterday, Feb. 10, 2021) got my second does of COVID vaccine, and reading this new article was alarmed as my recent CBC
showed a significant drop in platelets from almost normal down to 83. Thankfully not anywhere near the 0-5 you quote in the article. We all need to be vigilant in checking for bruising and petechia, especially immediately after getting the vaccine.
Helllo
I have not been able to get my vaccine yet – on many waiting lists for appointments –
I’m in a study with the natural history CLL at NIH – they tell me they don’t worry until the Platelets go down to 30. Mine has dropped to around 60s high 50s – everything else is pretty normal considering I have CLL. I am on imbruvica and have been ever since it was approved – three pills per day and I get IVGG every two months
I’ll pass this notice along to Dr Charles Hesdorffer who is a volunteer with Nih in the CLL and hematology department now as well as my regular oncologist who is not a specialist as well as to my CLL nurse at NIh to hear their take on this.
Always best to be aware
Thanks n stay well
https://www.theepochtimes.com/authorities-investigating-after-covid-19-vaccine-recipients-develop-rare-blood-disorder_3693312.html
The above is another article referencing autoimmune thrombocytopenia posdibly related to COVID 19 vaccination.
Would suggest that anyone who chooses not to take the vaccine obtain a letter from their physician recommending administration of one of the monoclonal antibodies (Lilly or Regeneron) ASAP should they develop evidence of acute infection…early treatment with either drug is likely to be highly beneficial.
11qRick.
Thank you so much, Chaya
Diane MacKenzie …
Have not received the vaccine yet but your article is alarming …
I’m 78 and have CLL for about 12 years now … in the past few months my white cells have gone up in number but have not required any medication so far … but … at 17 I developed ITP which resulted in a splenectomy at age 20 … went on to lead a fairly normal life …
My concern is … after reading your article should I even consider getting the vaccine ?? … knowing the little protection I have to Covid and now the possibility of it causing further damage ?? …
Thanks for the warning Chaya.
Aside to this does anyone have any experience of ‘pausing’ Ibrutinib? I’ve just been told to come off it after 6 years and that I won’t be able to go back on it in the future as I have probably become immune. I’m rather daunted by leaving the security blanket of Ibrutinib behind as it really suited me and after two lots of chemo it seemed like a wonder drug.
Diane:
My intent is not to alarm you but inform you. This is very early level warning, it may or may not pan out as they say. Moreover, I am not a physician and you should most definitely consult with your oncologist or CLL expert.
Indeed, that is the whole point of this article: to raise the issue so that patients like you who may be at higher risk discuss getting the vaccine shots with their physicians and make an informed choice.
Your ITP at 20 years old was treated by a splenectomy and it worked very well for you. That sounds like the ITP was caused by improper sequestration of platelets by the spleen – and possibly NOT due to autoimmune destruction of platelets. You are not in the same basket as patients who clearly had autoimmune attack on platelets, a very different story.
Bottom line, please do not be alarmed. Please be informed. And please bring this item to the attention of your doctors before you proceed. Forewarned is fore armed they say. I wish you all the best.
Molly
Ibrutinib is indeed a wonder drug. It kept a lot of CLL patients alive and in good health for many years, with surprisingly few adverse effects.
But there are clearly identified subset of people who become immune to the drug after several years. You are not alone. Newer drugs are now available to treat patients after Ibrutinib fails them. You need to discuss your therapy options with a CLL expert, just so you get a clear lay of the land. I strongly urge you to do that. Local oncologists may or may not be fully aware of all the latest and greatest drugs available to you. Best wishes.
Hallo Chaya,
vielen Dank für diese interessanten Informationen. Ich habe schon vor vielen Jahren Cll-Topics gelesen und freue mich dass Du hier wieder aktiv bist.
Ich habe neben meiner Cll (seit 1996) vermutlich eine ITP. Meine Thrombozytenwerte sind meist um 10 manchmal auch wesentlich weniger. Alle Therapien (Leukeran, Rituximab, Bendamustin, Globuline, Nplate, Cyclosporin, Ibrutinib und Venetoclax haben nicht geholfen oder mussten wegen den niedrigen Thrombozyten abgebrochen werden. Das einzige was bisher hilft ist Dexamethason oder Prednisolon. Sowohl die Uniklinik in Köln (Deutsche Cll Studiengruppe, als auch die Uniklinik in Freiburg sind haben keinen Vorschlag mehr. Dabei geht es mir trotzdem so gut, das ich jeden Tag im Schwarzwald wandern kann, oder mit dem Mountinbike unterwegs bin, trotz der niedrigen Thrombos, ich weiß, es ist riskant, aber ich will leben.
Meine letzte Grippeimpfung hatte auch ein Absinken der Thrombozyten zur Folge.
Eigentlich war ich fest entschlossen mich gegen Corona impfen zu lassen, nach Deinen Zeilen habe ich aber Zweifel. Danke für Deine Informationen.
Tranlate with Google :Hello Chaya,
Thank you for this interesting information. I read Cll-Topics many years ago and I am happy that you are active here again.
Besides my CLI (since 1996) I probably have an ITP. My platelet counts are usually around 10, sometimes a lot less. All therapies (Leukeran, Rituximab, Bendamustin, Globuline, Nplate, Cyclosporin, Ibrutinib and Venetoclax did not help or had to be stopped because of the low platelets. The only thing that has helped so far is dexamethasone or prednisolone. Both the university clinic in Cologne (German Cll study group, as well as the university clinic in Freiburg have no more suggestions. Nevertheless, I feel so good that I can hike in the Black Forest every day, or ride a mountain bike, despite the low thrombosis, I know it’s risky, but I do want to live.
My last flu shot also caused my platelets to drop.
Actually I was determined to get vaccinated against Corona, but after your lines I have doubts. Thank you, for your interessting Informations.
B”H
Dear Chaya:
Thank you for your continuing care and help to all your”gang” out here in CLL land.
I think you’ll remember the good old swine flu. When it reared it’s ugly head, my hematologist suggested I get the swine flu shot. I made sure it was not a live vaccine. I took it and ended up in the hospital the next day with 3000 platelet and lots of problems. Thank G-d I recovered from it with platelet infusion etc. But it put the fear of vaccines in me.
Wishing everyone only health,
EC Stromberg
Chaya,
So good to hear you are back in the CLL loop. We have missed you and all your important insights!
Chaya,
Finally got my login info saved for your life saving website! You are an angel and nice to see your input again.
Forgot to mention that I have received both Pfizer vaccines with no noticeable effects. I am on Imbruvica since 2019 and living ‘normal’ for now!
My Cll has returned after nearly a dozen years in remission. I attribute it to Pfizer COVID vaccine shot #1 which caused an unusual and undiagnosed change in my blood. I will be starting treatment in late April for Cll dominated by cd38.
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