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covid vaccine 9 months 1 week ago #70444

  • angelaphoto
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Anyone have info from their doc about receiving vaccine especially after the death of the doc in Miami?

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covid vaccine 9 months 1 week ago #70447

  • IhaveITP!
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Mine gave me the go ahead. I got it December 30. Any vaccine can drop platelets, but the benefits outweigh the risks. In most cases, low platelet counts can be treated and managed, where with Covid, no one really knows... I would still check with your hematologist though.
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covid vaccine 9 months 1 week ago #70449

  • 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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Anyone have info from their doc about receiving vaccine especially after the death of the doc in Miami?
Without post mortem results it is unknown if the death was related to the vaccine.
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covid vaccine 9 months 1 week ago #70458

  • Chad89
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I have received both doses of the Pfizer vaccine.

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covid vaccine 9 months 1 week ago #70474

  • florence
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The link to the Florida doctor's wife facebook regarding this: www.facebook.com/heidi.neckelmann/posts/10157817790183977
quoted below:

The love of my life, my husband Gregory Michael MD
an Obstetrician that had his office in Mount Sinai Medical Center in Miami Beach Died the day before yesterday due to a strong reaction to the COVID vaccine.
He was a very healthy 56 year old, loved by everyone in the community delivered hundreds of healthy babies and worked tireless through the pandemic.
He was vaccinated with the Pfizer vaccine at MSMC on December 18, 3 days later he saw a strong set of petechiae on his feet and hands which made him seek attention at the emergency room at MSMC. The CBC that was done at his arrival showed his platelet count to be 0 (A normal platelet count ranges from 150,000 to 450,000 platelets per microliter of blood.) he was admitted in the ICU with a diagnosis of acute ITP caused by a reaction to the COVID vaccine. A team of expert doctors tried for 2 weeks to raise his platelet count to no avail. Experts from all over the country were involved in his care. No matter what they did, the platelets count refused to go up. He was conscious and energetic through the whole process but 2 days before a last resort surgery, he got a hemorrhagic stroke caused by the lack of platelets that took his life in a matter of minutes.
He was a pro vaccine advocate that is why he got it himself.
I believe that people should be aware that side effects can happened, that it is not good for everyone and in this case destroyed a beautiful life, a perfect family, and has affected so many people in the community
Do not let his death be in vain please save more lives by making this information news.

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covid vaccine 9 months 1 week ago #70475

  • Chad89
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While it’s possible that 1 in a million something people could have that kind of reaction it doesn’t mean it’ll be yours or that the cons outweighs pros. Also, dying of a hemorrhagic stroke from ITP is rare in itself. So you’d be looking at the perfect storm. It’s very sad and those crazy rare things can happen.

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covid vaccine 9 months 1 week ago #70476

  • 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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I totally agree Chad. Many thousands if not millions of people will die from Covid but not from the vaccine.

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covid vaccine 9 months 1 week ago #70477

  • gozorakgogo
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I agree..the vast majority of people SHOULD get the vaccine asap. However, being that ITP sufferers are so few in number...I highly doubt the effects of the vaccine on those with ITP was ever considered because of the need to get it out to the public as soon as possible and as safe as possible for a majority of people. Some might fall through the cracks due to conditions that were not considered. This is not criticism of the process. There is no perfection in any vaccine. The most beneficial vaccines in the history of medicine have had negative and even fatal reactions in a small portion of the public.
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covid vaccine 9 months 1 week ago #70486

  • MelA
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I don't "suffer" from ITP, I have ITP.

We all have to make our own decision on this - I am now going to email my hematologist (who LOVES blood and knows a heck of a lot about ITP) and get his opinion and go from there. I really do not care to get the virus and have lasting lung and/or heart issues or maybe even die because of the virus.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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covid vaccine 9 months 1 week ago #70491

  • florence
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Not saying that vaccine should not be taken by ITP patients. Just that there are several things we may consider:
1. the possibility of ITP deterioration for ITP patients or people with autoimmune diseases. One can imagine no such study would be done, as the proportion of ITP patients is very small. During the pandemic, the majority is what people care. special patients with special diseases would not be the main focus.
2. whether one vaccine would be better than other vaccines for ITP patients? Maybe some vaccine is safer for ITP patients.
Everyone is different. Nobody knows what would happen to them. Any information from haematologists would be helpful.

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covid vaccine 9 months 1 week ago #70493

  • 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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I've just come off a UK ITP Support Association patients zoom meeting. 1 of our eminent ITP specialists Prof Adrian Newland and another ITP specialist doctor attended.
They said it did not matter which vaccine was given and strongly urged us all to get vaccinated.
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covid vaccine 9 months 1 week ago #70495

  • gozorakgogo
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lol I was not personalizing "suffer" to insult you. I was using the word in a proper context by its proper definition.

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covid vaccine 9 months 1 week ago #70499

  • angelaphoto
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Is there a way I could see this?

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covid vaccine 9 months 1 week ago #70500

  • 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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angelaphoto Is there a way I could see this? I assume this is addressed to me.
The session was recorded and will be available to members. There was some talk of it being available to the public but I'm not sure if a decision was made on that.

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covid vaccine 9 months 1 week ago #70501

  • florence
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In the eyes of a researcher, the fact is: there is no evidence to show whether covid vaccine would affect ITP patients the same way as other normal people. So currently the haematologists just do what they feel right for most people. Unless when more ITP patients get the vaccine and have shown statistically significant difference in response, people would assume the other way. Hopefully this would not happen.

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covid vaccine 9 months 1 week ago #70503

  • 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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Updated Statement on COVID Vaccine in ITP Patients from PDSA Medical Advisors (1/8/21)
The occurrence of severe thrombocytopenia and death of a man in Florida three days after receiving the Pfizer COVID vaccine is tragic and concerning. The relationship between the occurrence of severe thrombocytopenia and the vaccination, if any, is uncertain. To our knowledge, this is the first such event reported after over 5 million such vaccinations. It is impossible at this time to be certain whether or not the vaccination is causal or coincidental. Based on the available data, the benefit to risk ratio strongly favors vaccination of all adults, including those with ITP. None of the medical board members is aware of any similar events in our patient population, but we are open-minded as more information about this case or others emerge. We encourage our ITP community to notify PDSA with their own experience with the vaccine. PDSA will continue to update our patients about adverse effects relevant to the ITP community as information reaches us from the CDC, NIH, FDA MedWatch, and our collective clinical experience. To summarize, the opinion of the medical advisors of PDSA is that our patients with ITP should not be hesitant to be vaccinated based on all available information.
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covid vaccine 8 months 2 weeks ago #70640

  • MariaG
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X

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covid vaccine 8 months 2 weeks ago #70641

  • 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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Edit to my post the next morning
Hmm,,,,it would appear the original post I replied to has been taken down. Here is a link to the article it cited www.nytimes.com/2021/02/08/health/immune-thrombocytopenia-covid-vaccine-blood.html

My original post
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.
As a point of interest UK ITP association is collecting data on platelet counts pre and post vaccination.
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covid vaccine 8 months 2 weeks ago #70642

  • MelA
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You know I have the choice of maybe, just maybe, getting a lower platelet count (and for how long?) or getting the virus and ending up in the hospital on a ventilator (and everything that goes along with it, eg: catheter and other nasty stuff) - someone I know was on a ventilator & I was visiting her to talk and support, not covid, last year and it is not pretty - I did choose the vaccine. It is a choice everyone has the chance to make, on their own whether the hematologist says yes or no. I can't go along with scary articles - and there isn't going to be a special study of ITPers and how they react to the vaccine. How many antibiotics have ITP/unusual bleeding/bruising as a side effect and we take them. I just feel in this day and age the vaccine is the way to go - others might not and that is up to them - I'd rather not be a covid statistic, and am doing what I can not to be.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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covid vaccine 8 months 2 weeks ago #70643

  • Chad89
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Well said. Wishing the best for all of you.
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covid vaccine 8 months 2 weeks ago #70644

  • CindyL
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I'm with you, Mel!
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covid vaccine 8 months 2 weeks ago #70645

  • MelA
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mrsb wrote:

As a point of interest UK ITP association is collecting data on platelet counts pre and post vaccination.

mrsb I didn't know when I was going to get the vaccine, had my routine CBC on January 29 - then got the email to make an appt for the covid vaccine which ended up being on February 6 I think I'm going to ask my hematologist for another CBC a week or 2 after my 2nd vaccine dose just for curiosity sake.

It's good the UK ITP association is collecting the data on before/after vaccination count.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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covid vaccine 8 months 1 week ago #70652

  • StrayKat88
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>>As a point of interest UK ITP association is collecting data on platelet counts pre and post vaccination.<<
Brits on point with this! Maybe we can talk the PDSA into doing the same thing?

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covid vaccine 8 months 1 week ago #70653

  • momto3boys
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Just got some great news! I had signed up with my local health department to get in line to receive the vaccine a month or so ago. I received an approval email to schedule an appointment several days ago, but my hematologist had told me to wait (I had a count of 17k and symptoms).
I went back for labs yesterday and I'm up to 232k! I had never done the dexamethasone pill course at home, but I'm obviously quite responsive. I immediately asked my doctor if I could schedule for a vaccine (I have tons of room to crash from a count of 232, which would be waaay worth it to avoid covid!) and he said YES!!
I'm going for my vaccine on Sunday and am sooo excited. Just had to share, and I will be sure to post updates about my counts afterwards.

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covid vaccine 8 months 1 week ago #70654

  • StrayKat88
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>>I can't go along with scary articles - and there isn't going to be a special study of ITPers and how they react to the vaccine. How many antibiotics have ITP/unusual bleeding/bruising as a side effect and we take them. <<
A good point! I've only been through Prednisone and Rituxan at this point, and had read a bunch of side effects which were concerning. That has been true for the other meds that I take. Neither Prednisone or Rituxan worked for me, but they didn't cause me any side effects either. So much furrowing of my brow over nothing. Sometimes you just have to drop the hammer and see what happens. It's funny, as an old dude, I stop and analyze things too much. It causes anxiety and is somewhat counterproductive, overall. As a young guy, it was just; "Go for it, and figure it out if it becomes a problem!" LOL. Now trying to find a balance. :lol:

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covid vaccine 8 months 1 week ago #70667

  • MelA
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StrayKat I was just the opposite of you - as a young lady I'd say no to everything & then think about it later, as an old lady I just go for it :)

momto3boys - fabulous count! Let us know how it goes tomorrow and which vaccine you received. I got Pfizer in my dominate arm and didn't get sore. My 2nd dose is on the 27th

Chad - wishing the best for you also!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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covid vaccine 8 months 1 week ago #70671

  • momto3boys
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momto3boys - fabulous count! Let us know how it goes tomorrow and which vaccine you received. I got Pfizer in my dominate arm and didn't get sore. My 2nd dose is on the 27th

I got my shot this afternoon! They were doing Pfizer today, and everything went smoothly. I told them about my bleeding disorder (that was one of the questions), and they just made me wait there for thirty minutes of observation after receiving my shot instead of the usual fifteen. I had no adverse reaction at the time and no excessive bleeding. Presumably my count is still decent and hasn't started tanking post-steroid course yet.

The only side effects that I have so far are a "chilled" feeling in my arm and upper back. No real soreness, just a kind of chill emanating from where the shot went in. It actually feels refreshing, so my kids are laughing at me that I enjoyed getting the vaccine and will want to get more! No lethargy or fever so far.

My plan is to go for a platelet count on Wednesday to see what my levels are doing and to stay ahead of any kind of a crash. I don't want to go too soon for a count, so as to give it time to drop if it's going to.

Really so happy and fortunate that I was able to get in and get a chance for a vaccine. Good luck with your second shot on the 27th!

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covid vaccine 8 months 1 week ago #70672

  • MelA
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That is good news mom!! Happy for you!! Did they schedule your 2nd dose?
I'm going to ask for a count after my 2nd dose, get it on a Saturday so was thinking of getting the CBC either the Wednesday or Thursday after it. Can't wait to hear what your count is this week! Let us know!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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covid vaccine 8 months 1 week ago #70674

  • 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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Still waiting for my invitation to attend !!!

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covid vaccine 8 months 1 week ago #70675

  • momto3boys
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That is good news mom!! Happy for you!! Did they schedule your 2nd dose?
I'm going to ask for a count after my 2nd dose, get it on a Saturday so was thinking of getting the CBC either the Wednesday or Thursday after it. Can't wait to hear what your count is this week! Let us know!!


Sounds like you have a good plan for checking counts afterwards. My next shot will be on March 7 (the CDC vaccination card came with the date pre-filled).

Our local health department really did an amazing job in setting up their system for getting people moving through the vaccine distribution site. There were automatic texts telling me to register my presence from the parking lot, then a subsequent text telling me when to approach the building for registration. Lots of volunteers triaging people and maintaining distance between everyone. Only people with texts to proceed were allowed to go in at their scheduled times. An automated text to register for the CDC v-safe system for reporting any symptoms post-vaccine. And finally an automated text based on shot administration time telling me when my 30 minute wait was up. I am supposed to receive an email or text in a week or so with a follow-up link for scheduling my second shot. I have to say a lot of people worked very hard to set up a nice system! I didn't feel unsafe from crowding at any point during the administration process (also had on my double mask plus face shield). Props to the local health departments scrambling to get things set up; I'm sure it's been such a logistical challenge!

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