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New ITP Cases potentially linked to COVID Vaccine 2 months 1 day ago #70647

  • richardg
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This New York Times article sums up the latest developments around a couple of patients that were diagnosed with ITP shortly after receiving the Pfizer and Moderna vaccine: www.nytimes.com/2021/02/08/health/immune-thrombocytopenia-covid-vaccine-blood.html

We all know about the untimely passing of Dr Gregory Michael, and for the most part, it seems that the consensus was it was coincidental. I wonder if these new developments should be cause for caution or concern? Can anyone shed any further light on the matter?

I'm 33 years old, I don't take any current treatment, and I'm usually registering a count of 20-40 on my CBCs. I've been looking forward to the vaccine, but I'd be lying if I said these reports don't give me some amount of pause.

EDIT: I ended up moving forward with getting the Moderna vaccine despite my previous concerns. My platelet count came in at 56 on my latest CBC (6 days after receiving the vaccine). Needless to say, that's a very high platelet count for me and the vaccine appears to have had no effect on my ITP. I am glad I went forward with it!
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New ITP Cases potentially linked to COVID Vaccine 2 months 1 day ago #70648

  • RR01
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I am now totally scared , dont want to get this vaccination thing. I am 44 and I dont take any treatment and am in US. My numbers are 35-45 range.. All this is frightening :(

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New ITP Cases potentially linked to COVID Vaccine 2 months 23 hours ago #70649

  • poseymint
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RRo1- I totally understand if you have lower but stable safe counts you don't want to do anything to make them crash. Its a big decision.

Thanks Richardg for the NY Times article- very good information! It seems like these people are developing a very severe case of ITP after getting the covid vaccine. I'm glad Dr Bussel is getting involved. But you know, viruses as well as vaccines can cause ITP. Here is an article about the Covid virus causing thrombocytopenia/ITP so pick your poison. Stay safe everyone!

"Immune thrombocytopenia, often known as immune thrombocytopenic purpura (ITP), has emerged as an important complication of COVID-19."
www.ncbi.nlm.nih.gov/pmc/articles/PMC7501509/

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New ITP Cases potentially linked to COVID Vaccine 2 months 16 hours ago #70651

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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As well as the story of the 2 women the article also states the following
"The cases are not a reason to avoid Covid vaccination, doctors say. The risk of serious illness from the coronavirus is much greater than the risk of developing this rare condition, and the vaccines are crucial for controlling the pandemic"

"More than 31 million people in the United States have received at least one dose, and 36 similar cases had been reported to the government’s Vaccine Adverse Event Reporting System, VAERS, by the end of January."
That equates to a 0.0001% chance of platelets dropping.
Where a world wide pandemic is concerned one has to consider the bigger picture rather than just concentrating on oneself.
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New ITP Cases potentially linked to COVID Vaccine 1 month 4 weeks ago #70655

  • Luvmycat
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I came here seeking this information. I am concerned as well about my husband. His platelets generally range from 25 to 30,000. He chooses not to treat his ITP unless he has to have some type of procedure done and then does IVIG and dexamethasone. I was wondering if anyone on these forums has gotten the vaccine. We asked the hematologist via email and got a stock answer that said `check with your primary care physician.' I found that kind of ridiculous coming from hematologist.

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New ITP Cases potentially linked to COVID Vaccine 1 month 4 weeks ago #70656

  • Dave
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  • Diagnosed October 18, 2011 Bloomington, IL
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It should be your PCP checking with your hematologist. I would check with a different hematologist if I were you guys. I got the Moderna vaccine on Tuesday. No signs of any platelet issues, but my counts have always been over 150 since my diagnosis 9 years ago with a count of 1 and a 5 day hospital stay in single digits.

I did some research before deciding to take the vaccine and learned that ITP is a far more common side effect of COVID infection than COVID vaccination. The safest thing is to avoid the vaccine and humans until herd immunity takes over, but that isn't really an option for most people. The vaccine appears to be much safer than the virus, and the only way to live a normal life without risking infection.

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New ITP Cases potentially linked to COVID Vaccine 1 month 4 weeks ago #70657

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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We asked the hematologist ... and got a stock answer that said `check with your primary care physician.' I found that kind of ridiculous coming from hematologist.
Time for a new haematologist. My GP openly admits his knowledge of ITP would not cover the back of a postage stamp and basically relies on me to tell him what he needs to know. Which is not much as my haemo manages my ITP.
UK ITP Association physicians have advised us to get the vaccine and take remedial action to raise counts if they drop.

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New ITP Cases potentially linked to COVID Vaccine 1 month 4 weeks ago #70658

  • gozorakgogo
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Ive decided against getting the vaccine yet. I am eligible because of my job but there are those more in need at the moment anyway. Particularly those who are older and with conditions that could very well lead to a more problematic case of the virus should they be infected. I personally am not the least bit concerned when/if I contract the virus. I also have the luxury of having a job and a lifestyle that affords me the ability to not be in close proximity to anyone for more than a few minutes a day the entire day.

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New ITP Cases potentially linked to COVID Vaccine 1 month 4 weeks ago #70665

  • MelA
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I'm with mrsb - that is absolutely ridiculous for a hematologist to tell you to check with your PCP about an issue that has to do with a blood disorder!!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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New ITP Cases potentially linked to COVID Vaccine 1 month 4 weeks ago #70666

  • Luvmycat
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Thanks for the input everyone. This really has us torn. We need both hands to count the people that WE KNOW who have died from covid, thankfully, no family members. It is terrifying. After thinking about it for a few days, I have a feeling that the 'check with your PCP' answer from my email had two purposes. #1. He did not want to commit or be responsible for the decision to get the vaccine or not. #2. The hema/oncology dept was inundated with emails and phone calls asking the same question. It is a large teaching hospital and the hema is excellent. I think that response was to deflect any decison back to the patient. Frankly, I can't cast blame. There is not enough known about this vaccine or the virus. Even though it's supposedly not as effective, I believe the J&J vaccine would be the safer alternative for folks with ITP. Just my opinion. The only other alternative is to stay in isolation for God knows how much longer. This was interesting reading. It addresses ITP patients and the vaccine at the very end.

www.hematology.org/covid-19/covid-19-and-itp
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New ITP Cases potentially linked to COVID Vaccine 1 month 4 weeks ago #70670

  • MelA
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Thanks for you opinion Luvmycat. I don't know enough about the J&J vaccine to form an opinion, nor Pfizer or Moderna either really, but I'd rather have a vaccine that was more effective because I know darn well that once given any vaccine - even one dose - people are not going to be as cautious as before they got it and that is going to add to more cases of it. Already Montana has said no more masks need to be worn - oh yeah?!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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New ITP Cases potentially linked to COVID Vaccine 1 month 3 weeks ago #70698

  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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I had the first vaccination injection a month ago, will have the second next week. I had no side-effects, other than a mildly sore arm for a few days. I had Pfizer.
Platelets today were over 200--I'm on Tavalisse and 6.5 mg of prednisone. I've had ITP since 2000.
I think I would be much more likely to suffer ill effects from Covid than the vaccine. And in order to get this Pandemic under control, most of us need to be vaccinated.
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New ITP Cases potentially linked to COVID Vaccine 1 month 3 weeks ago #70699

  • Luvmycat
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Great! I agree about the vaccines. Not gonna lie, the vaccine makes me a little nervous, espec for my husband with ITP. I actually emailed Dr. James Bussel in New York last night who has been in many of the news articles about ITP/Covid lately and actually consulted on a case I read about. I gave him a brief summary of my husband's ITP. He actually answered my email at 9 pm! I was shocked! I figured it'd get buried or ignored. But he did recommend for him to get it.

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New ITP Cases potentially linked to COVID Vaccine 1 month 3 weeks ago #70700

  • MelA
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Karen that's great!! Thanks for reporting your count - I'll let everyone know what mine is after my 2nd Pfizer shot. Hope you are doing well!!

Luv - that's so nice Dr. Bussel got back to you, and so quickly!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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New ITP Cases potentially linked to COVID Vaccine 1 month 2 weeks ago #70722

  • trobach
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Just curious why do you believe the J&J vaccine would be safer than the Pfizer or Moderna vaccine?
Some people with ITP have had platelets drop from flu shots, MMR vaccine, etc. All vaccines ask the immune system to create antibodies to the virus.... just curious the thoughts on this.

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New ITP Cases potentially linked to COVID Vaccine 1 month 2 weeks ago #70723

  • Luvmycat
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I realize these other shots cause can platelet issues. These shots have been around for a long time. The MMR is a childhood vaccine so it wouldn't really affect someone who develops ITP as an adult. BUT these covid vaccines are so new none of us knows the after effects. As you know, Pfizer & Moderna are the front runners right now using the mRNA technology. The side effects of these have been well-publicized, including spontaneous/acute cases of ITP. I know some people who have had horrible sickly side effects from both Moderna and Pfizer, especially after that 2nd shot. (As I've said, I need both hands to count the number of people that I know who have died from covid who unfortunately didn't live to get the vaccine.) Anyhow, these vaccines really send the immune system into overdrive so I'm a bit concerned about sending an immune system, that has already gone awry destroying platelets, into overdrive from a new vaccine. The J&J vaccine, although it stimulates the immune system, uses a different technology and doesn't require a 2nd shot. I have read a lot about it. But who knows? If millions of people get the J&J vaccine, we may see the ITP cases with that one too. Regardless, I and my husband are getting whichever vaccine is available to us first but with nervous anticipation.
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New ITP Cases potentially linked to COVID Vaccine 1 month 2 weeks ago #70724

  • MelA
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Luvmycat you said "sending an immune system, that has already gone awry destroying platelets, into overdrive from a new vaccine" - the immune system isn't destroying platelets, my understanding is that our platelets are now covered with an antibody and when these antibody covered platelets are detected by the organs in the body that clean the blood the organs do their job and clean the blood by destroying those alien platelets. It is ones body just doing what it is supposed to do. That's how it has been explained to me since I was diagnosed in 1989.

Also I asked an expert in statistics about this - at the time it was something like 36 reported ITP cases and over 131,000,000 people vaccinated - that comes to about a 1 in a million chance of it happening. (I may have those #s reversed but you get the picture)

The Johnson & Johnson vaccine will also have the immune system get busy. But as I've mentioned, and others have said too, we all have to do what we feel is right for ourselves.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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New ITP Cases potentially linked to COVID Vaccine 1 month 2 weeks ago #70757

  • richardg
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Update! I went ahead and got the Moderna vaccine. My platelet count on my latest CBC (6 days after receiving the first dose of Moderna) came in at 56. This is actually higher than normal, so the vaccine has clearly had no effect on my ITP condition.

I feel a lot better now, and it's become very apparent to me that the chances of a bad reaction are just about as rare as they are with any other vaccine.
The following user(s) said Thank You: Dave, mrsb04, MelA

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New ITP Cases potentially linked to COVID Vaccine 1 month 2 weeks ago #70761

  • MelA
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That is super richardg - so happy your count was good, hope that continues after the 2nd dose.
I don't know about you, but I kind of felt a sense of relief & freedom after the 1st dose - crossing my fingers I feel that way after the 2nd one on Saturday :)
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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