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ITP and Covid-19 3 months 3 weeks ago #70365

  • Chad89
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Good stuff. Thanks for sharing. Yeah the fact of the matter I would assume is that nobody fully knows because this is a new vaccine. So I received the first part of the vaccine about 12 hours ago. Arm is a bit achey but that’s about it. My Dr mentioned that even if my response to the vaccine isn’t as robust as someone who hadn’t received two doses of Rituxan back in October, it’s hopefully better than nothing and might help lessen the severity of Covid. I can only hope. So that’s where I’m at and I’ll keep you updated as best as possible.
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ITP and Covid-19 3 months 3 weeks ago #70366

  • b2h
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Sounds good. I'm glad you didn't have a severe reaction to the vaccine.

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ITP and Covid-19 3 months 3 weeks ago #70370

  • MelA
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Chad, glad all went well with the injection!
And that is my understanding too - a 2nd injection is required.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP and Covid-19 3 months 4 days ago #70425

  • Chad89
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Had the second dose of the Covid vaccine a day and a half ago. No noticeable side effects yet.
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ITP and Covid-19 3 months 1 day ago #70437

  • MelA
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Thanks for letting us know Chad! I'm now in a virtual line to get it when those in 1b start to get it.
Happy for you !
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP and Covid-19 3 months 1 day ago #70439

  • 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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Chad, which vaccine did you have?

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ITP and Covid-19 3 months 3 hours ago #70459

  • Chad89
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Pfizer. Didn’t notice any side effects from it. I had a count done the day before the second dose and my platelets were 318k. I’ll get another lab next week to see if it dropped my numbers

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ITP and Covid-19 2 months 2 weeks ago #70569

  • gozorakgogo
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Doctors Search for Missing Link Between COVID and ITP
Donavyn Coffey

January 27, 2021

Editor's note: Find the latest COVID-19 news and guidance in Medscape's Coronavirus Resource Center.

Hospitalist Sarah Stone, MD, arrived for her dayshift at Sharp Chula Vista one day in late December. The ICU and hospital wards were still overflowing with COVID-19 patients. But over the last couple months, she'd also seen more and more recovered patients presenting with a myriad of symptoms: pulmonary emboli, cardiomyopathy, a shocking case of aspergillosis, and those rare cases of "long COVID," the patients who just can't get better.

This morning it was a woman in her 30s. She felt fine, but 2 weeks after recovering from COVID-19, she had unexplained bruising on her arm, a petechiae rash on her legs, and her gums were bleeding. Once admitted to the emergency department, her platelet count of 5000/mm3 was a dead giveaway of immune thrombocytopenic purpura (ITP).

In Stone's experience, new and otherwise unexplained symptoms so soon post-COVID can't be written off as a coincidence without some additional consideration. But a quick preliminary search of the literature during her rounds came up almost empty. She found one report with three cases of post-COVID ITP. But other online resources made no mention of it. Kenneth Johnson, MD, the hematologist/oncologist consulting on the new case, told Stone he'd seen one other case of post-COVID ITP only earlier that month. Stone called a sister hospital. They'd seen one other case just weeks before.

"I was surprised to find just three cases in the literature when we had seen three among us in a matter of weeks," Stone told Medscape Medical News. Something was missing.

A Missing Link
ITP is caused by an immune reaction against a patient's own platelets. Platelet numbers drop causing easy bruising, bleeding gums, and internal bleeding. Acute cases can usually be resolved within 3 months, but for some patients the condition can be extended or even chronic.

"We know that infections like influenza can cause ITP, so in this light, [COVID-associated ITP] might not be surprising," Gerard Jansen, MD, PhD, an internist and hematologist in Rotterdam, Netherlands, told Medscape Medical News.

Jansen and his colleagues recorded three cases of post-COVID ITP in May 2020 — the report Stone had found during her shift. Two patients developed ITP several weeks after COVID-19 and responded to treatment with corticosteroids and intravenous immunoglobulin G (IVIG). The third patient, however, died of an intracerebral bleeding while still battling COVID-19. He was retrospectively diagnosed with COVID-associated ITP.

A deeper dive into the literature uncovers additional case reports from India, France, the United Kingdom, Turkey, and one from China as early as January 2020. A September 2020 review of ITP secondary to COVID included 23 papers and a total of 45 patients. The review authors note that more than 70% of cases occurred in patients who were over 50 years and 75% had had moderate-to-severe COVID infections. However, the sample size of 45 is too small to definitively describe what's happening in the overall population.

ITP's link to COVID gained a media spotlight earlier this month after the Miami obstetrician, Gregory Michael, MD, developed ITP days after getting the Pfizer COVID vaccine. In early January, after 2 weeks in the ICU, Michael died of a hemorrhagic stroke caused by the low platelet count.

Pfizer said in a statement that they are "actively investigating" the case, "but we don't believe at this time that there is any direct connection to the vaccine." Other experts have said the timing, particularly in a relatively young and healthy man, means a link to the vaccine is possible or even likely, but final results won't be known until the US Centers for Disease Control and Prevention finishes its investigation.

But "it is quite unusual to die from ITP," San Diego hematologist Johnson told Medscape Medical News. In his more than 20 years of practice, he has never had a patient die from the condition.

For his part, Jansen, the hematologist in Rotterdam, said that at this point we just don't know if there's a link between the vaccine and ITP. Both infection and drugs are well established causes of ITP, so with that general mechanism or pathology in mind it makes sense that COVID and the vaccine could instigate ITP. But it would be very difficult to prove in just one instance, he said. And considering the millions who have thus far received the vaccine without incident, and the known risks and dangers of COVID-19, "we still advise to vaccinate," he said.

The Number of Cases Is Underestimated
Since his original case report in May, Jansen has seen five or so additional cases. But the causal link between the coronavirus and the hematologic symptoms is still undefined. "We don't know much about platelet counts in COVID-19 at all," he said. It could be that COVID somehow inhibits platelet production or that it kills existing platelets. Whatever the exact relationship to the virus, Jansen expects that the true number of COVID-related ITP cases is higher than current estimates suggest.

One reason it isn't coming up more often, Jansen said, may be because the cause of ITP in COVID patients is hard to pin down. In his case report from May, Jansen and colleagues wrote: "And there are numerous other factors that can cause thrombocytopenia where COVID is concerned. For instance the coagulation activation by COVID‐19 infection leading to disseminated intravascular coagulation (DIC) and subsequent thrombocytopenia. Also, treatments for COVID‐19, including heparin, azithromycin and hydroxychloroquine, may lead to thrombocytopenia."

Tracking and understanding COVID-associated ITP first requires the extensive process of elimination needed to diagnose it.

In addition, drugs used to treat COVID could be masking COVID-related ITP. "Dexamethasone is a mainstay of COVID treatment. And it's how we treat ITP," Johnson said, which means physicians may be treating ITP without even registering it. And that's one hypothesis for why Stone and Johnson didn't see a case until 9 months into the pandemic.

Treating COVID-associated ITP also has its challenges, particularly in patients who develop it during an acute COVID infection and are at risk for both internal bleeding and thrombosis. This was the case for the third patient in Jansen's case report. The patient developed a pulmonary embolism and had a falling platelet count. He was given a platelet infusion and then an anticoagulant for the thrombosis. But a retrospective look at the case revealed the transfusion "did not increase numbers at all — which suggests ITP," Jansen said. Intracerebral bleeding was the cause of death.

That's why "it's important to be aware of this phenomenon," Jansen said of COVID-associated ITP. If a transfusion is unsuccessful, consider that the patient may have ITP and adjust. Johnson, in San Diego, hasn't had to treat a patient battling both complications simultaneously but says the ideal course of action would be to raise platelets with steroids and IVIG and then give the anticoagulant once the platelet count is higher. But reality is rarely ideal. Often these two treatments will have to be given concurrently since the patient faces two life-threatening risks, he said. "It's a very challenging situation," he said.

The good news is that standard treatments for ITP seem to work for COVID-associated ITP. Stone and Johnson's 30-year-old patient responded so well to intravenous steroids that IVIG was unnecessary. She's now on a slow prednisone taper and maintains platelet counts at 114,000/mm3 at her weekly follow-up appointments with Johnson.

Meanwhile, Jansen's two other patients, now nearly a year out of treatment, require no additional medication. One of the patients is fully recovered and, though the other still has lower than normal platelet counts, she has no bleeding symptoms and her platelet counts remain stable. Still, Jansen is anxious for more data looking at the platelet counts in every COVID-19 patient and to combine findings from existing COVID-associated ITP patients.

For Stone, she says she's added one COVID-19–associated complication to her belt. One less aftereffect will catch her off guard. And she wants others to have the same information.

"It's just a little bit daunting. We don't know how bad post-COVID will be," she said. "There's so many levels to this disease. Some people deal with it for so long and some people just get better and move on — we think...so far."

Follow Medscape on Facebook, Twitter, Instagram, and YouTube.

Medscape Medical News © 2021
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ITP and Covid-19 2 months 2 weeks ago #70570

  • thomaskm
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  • Male 69 Diag. April 2017 in ER with Petechiae from knees to toes 4 oral cheek blood blisters 3000 count. 3-IVIG rescues, 4, 4 day 40mg Dexamethadrone blasts. Best read 416,000 11/24/2020 (Covid+ bump) On Nplate maintenance every 3 weeks
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This Covid journey ended for me on Tuesday 1/26/2021 when I received my first N-Plate since mid October 2020. As I stated at the top of this thread Covid spiked my count to 416. I started having my counts checked every two weeks for fear I might crash during a 3-week cycle without blood draw. My counts took a 3 month steady drop to arrive at 116 and met my threshold for treatment (below 120). I was thankful for the soft landing but very disappointed that there was only a pause in my chronic ITP. I will return to my 3-week cycle when I meet with my Hemo in 2 weeks. I am blessed to have a Dr. that listens to my input and is flexible!
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ITP and Covid-19 2 months 1 week ago #70599

  • Jcallahan
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Hi Chad
Now that you are a few weeks out
Any new symptoms or drop in count?

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ITP and Covid-19 2 months 4 days ago #70619

  • MelA
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Got my 1st Pfizer injection today - 2nd will be on the 27th. It is a relief, feel like a weight has been lifted. Of course still will distance & wear a mask etc. My arm doesn't even know a needle was stuck into it. I'm hoping after the 2nd one I won't have any side effects but you never know.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP and Covid-19 2 months 4 days ago #70620

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That's great, Mel! Hopefully you don't have side effects. Keep us posted.
I have no idea if/when I'll get mine. Both Steven and I have health issues.

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ITP and Covid-19 2 months 4 days ago #70621

  • MelA
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Thank you Cindy!! My husband is still on the list for his which we hope will be soon!
Know someone who is 85.5 years old and he has parkinson's - just got his 2nd Pfizer last Wednesday and he did not have any side effects, my daughter in law did. Hearing that us old folks don't get side effects as often as the "younger" folks as old folks have weaker immune systems.

Sure hope you 2 can get yours soon!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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ITP and Covid-19 2 months 4 days ago #70622

  • Chad89
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No I still haven’t noticed any side effects or drop. Fingers crossed.

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ITP and Covid-19 2 months 4 days ago #70623

  • mrsb04
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No idea when I will get mine. It's being done by age groups here. The 70-75 group are being called for now. I spoke to my GP the other day he told me I would be a high priority in the 16-64 group. Yesterday the government announced they expect all 50+ to have had their first dose by the end of May.
The NHS is setting up a new research project to see if there is any effect from having 2 doses from different brands of the vaccination. 850 over 50's will be recruited. I have offered my services but have not heard anything yet. Maybe because I answered yes to the 'do you have a clotting disorder?' question.
My daughter in law had the AstraZeneca one and said she woke up in the middle of the night the coldest she has ever felt but was fine in the morning.

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ITP and Covid-19 2 months 4 days ago #70624

  • momto3boys
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Long time no see everyone! I'm happy to hear that a few of you were able to get the vaccine and that that is going well. I had an appointment with my hematologist on Friday to ask about it because I've been itching to get a shot myself. He recommended that I not get it and is about to publish a paper about negative ITP related side effects with both the Moderna and Pfizer shot (It's Dr. Kessler, one of the PDSA advisors). He said he has several cases of new ITP coinciding with vaccination, and several cases of existing ITP patients having worsening of the condition after getting the shot. None of that means that the recommendation will change, necessarily, but he advised that I personally hold off for now until I can get a stable, higher baseline count and they learn more about ITP-related effects. I am not sure if there were any deaths in his study (except maybe the doctor in FL, if he is included) because he said he is in the process of releasing it and I can't find it anywhere yet, but he advised caution for me, likely because I'm always a low-counter to start with. I just started having symptoms and my count is at 17k right now.

I have made it through almost a year of the pandemic with no labs, but finally had to double mask+shield to go in for bloodwork. Anyway, just started the dexamethasone tablets he prescribed to get me up immediately and will go on Doptelet once the specialty pharmacy can get that to go through. I bailed on Promacta last May/June because of bone pain, but hadn't gone in to see a doctor about it until this Friday (and even then, I only did a virtual visit) because I wasn't having symptoms and didn't want to start a whole new treatment in the midst of the pandemic. Not enjoying the dex at the moment (sorry if this post sounds manic!)... it's my first time taking it at home (I may have been given some after the delivery of one of my children in the hospital, but I don't recall now).

Hope you are all doing well and it's nice to still see you long-timers floating around on here. My in-laws who live with us (ages 70 and 71) were able to get vaccines (one got Pfizer and one got Moderna because we took whatever appointments we could quickly click and get) and are doing quite well! So that's been a wonderful relief for all of us.
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ITP and Covid-19 2 months 4 days ago #70625

  • momto3boys
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mrsb04 wrote: My daughter in law had the AstraZeneca one and said she woke up in the middle of the night the coldest she has ever felt but was fine in the morning.


Interesting about the feeling cold. My sister-in-law is a dentist, and she got the Moderna shot. The first dose went fine with no symptoms, but after the second one she had the same complaint of feeling extremely cold for a day or two. It cleared up fine afterwards and she's been doing great since. Curious side effect! Good luck in joining one of the trials.
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ITP and Covid-19 2 months 3 days ago #70627

  • poseymint
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In California they are now vaccinating health care workers and folks over 75. I work in home health care so was able to get my 1st dose of Moderna on Jan 22. I was very surprised that I had almost no side effects, felt fine for 12 hours then some achiness/myalgia, slight headache that night. It was nothing. I took 2 Tylenol before bed and felt good the next day, even went swimming. My arm was sore, I still have a bruise but thats because my platelets are only 19. Looking forward to getting the second dose.

When I arrived at my appt to get the vaccine they asked if I had a bleeding disorder. I didn't quite know what to say. Its so hard to get an appointment, I didn't want to say anything that would disqualify me from getting the vaccine. But then I don't like to lie, so I said I had low platelets but quickly added that I don't have a problem with bleeding. They explained that their only concern was with people who might bleed from the injection site. I assured them I wouldn't have any problem. Next time I'll just say: no bleeding disorder.

Along with ITP, I also have Sjogrens/Lupus autoimmune disorders and have a history of having reactions to vaccines so I was nervous. The Shingrix shingles vaccine really did me in. For 5 days I was aching, feverish fatigued and even had symptoms like bronchitis- inflammation in my lungs/bronchi, painful breathing. My doctor called it asthma but it was unlike what I know to be asthma, seemed like mild bronchitis. I decided not to get the second Shingrix vaccine, doctors agreed. I've also had reactions to the flu vaccine, stiffness in my hands and joints- an inflammatory reaction. I've had both pneumonia vaccines and had no problem at all.

The Covid vaccine didn't seem to affect my counts. They were 19 a few days before the vaccine, 18 the next week, and 19 following week.
RE: the doctor who died after the vaccine in Florida. I believe his wife's story that he got a severe case of refractory ITP after getting the vaccine and he died of a brain hemorrhage caused by refractory ITP. It totally makes sense because people get ITP from vaccines, a number of people on the forum have said their ITP came after a vaccine. That is a sad story, it seemed they couldn't do anything to get his counts up.
I don't personally worry about my counts going lower from a vaccine because my ITP is not refractory, there are drugs that would get my counts up. But if I wasn't already on medication, I would be concerned because a drop in counts might cause an ITPer to have to start on medication. And you never know where that path will lead you. Stay safe everyone!
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ITP and Covid-19 2 months 3 days ago #70628

  • MelA
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poseymint my immunologist told me not to get the Shingrix vaccine as it had not been studied in those of us with autoimmune disorders. I've had shingles 2x.

Funny, I wasn't asked about bleeding disorders when I got my Pfizer yesterday - just if I'd had an anaphlyxis [sp?] reaction to a vaccine.

You know, I just feel getting the vaccine is better than ending up with a breathing tube in the hospital - I didn't consult with my hematologist, just put my name on the list for the vaccine.

mrsb - that would be an interesting study you'd be in, hope you are picked!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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ITP and Covid-19 2 months 3 days ago #70629

  • StrayKat88
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>>Just as well. It is helping me to break from "where will my levels be the next CBC?" anxiety and worries that I initially had. now im pretty much over it and dont even think about it.<<
Yep. The constant blood draws and platelet count concern were driving me a little bit crazy. My counts are low, but I am asymptomatic. Prednisone and Rituxan did nothing. I finally decided to take a break from all that, and return to it at some point down the road. Next up is supposed to be Nplate. Think I'll work on the rest of my health for awhile.
Good Luck to all...

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ITP and Covid-19 2 months 3 days ago #70630

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Interesting to hear about the paper that Dr. Kessler is going to publish on the ITP related side effects of the Moderna and Pfizer vaccines. One hopes that this is not a significant problem that is truly related to those vaccines. I've been considering getting the Johnson and Johnson adenovirus/recombinant DNA based Covid vaccine as an alternative. In my layman hokey pokey web searches, I haven't heard of any ITP related issues associated with it (so far), and their clinical trials were pretty big. Of course they don't have millions of shots out there like Pfizer or Moderna yet, so who knows what could crop up over time. Recombinant based vaccines are common have been used safely with immunocompromised people in the past. So...I'm hoping that the adenovirus/recombinant DNA vaccine is different/safer for ITP folk. Perhaps it would be good to ask Dr. Kessler for a preliminary opinion?
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ITP and Covid-19 2 months 3 days ago #70632

  • mrsb04
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UK ITP Association doctors have advised getting vaccinated. The chances of a serious reaction are low. If counts drop then treatment will be needed. I would rather take a bolus of steroids than going into multi organ failure where I end up ventilated on ITU
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ITP and Covid-19 2 months 3 days ago #70634

  • momto3boys
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mrsb04 wrote: UK ITP Association doctors have advised getting vaccinated. The chances of a serious reaction are low. If counts drop then treatment will be needed. I would rather take a bolus of steroids than going into multi organ failure where I end up ventilated on ITU


PDSA is also still recommending vaccination! I am pretty sure that my post was somewhat rambly and unclear in general based on the replies. I was just talking about my personal situation with my doctor and some of his recent research. It's entirely possible that there are some commonalities in the ITP patients (or post vaccinated population sliver that is developing ITP) that caused him to recommend waiting in my case. I'm itching to read the article, of course, but am still hopeful that I can get vaccinated after I deal with my low count issues. He did not take that option off the table for the future, but I'm guessing he wants me to start at a higher number to have more leeway for a crash post-shot without problems. And even if Moderna and Pfizer won't work for me, I have hope that J&J might be different? Time will tell.

When my mother-in-law went for her shot, it was towards the end of the day. I actually asked if they had any extra shots that would spoil because I wanted one (probably not my best idea because I was still waiting on talking to my doctor at that point, but I was ready to go!).

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ITP and Covid-19 2 months 3 days ago #70635

  • momto3boys
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StrayKat88 wrote: Interesting to hear about the paper that Dr. Kessler is going to publish on the ITP related side effects of the Moderna and Pfizer vaccines. One hopes that this is not a significant problem that is truly related to those vaccines. I've been considering getting the Johnson and Johnson adenovirus/recombinant DNA based Covid vaccine as an alternative. In my layman hokey pokey web searches, I haven't heard of any ITP related issues associated with it (so far), and their clinical trials were pretty big. Of course they don't have millions of shots out there like Pfizer or Moderna yet, so who knows what could crop up over time. Recombinant based vaccines are common have been used safely with immunocompromised people in the past. So...I'm hoping that the adenovirus/recombinant DNA vaccine is different/safer for ITP folk. Perhaps it would be good to ask Dr. Kessler for a preliminary opinion?


I will definitely talk to him about it more when I have to actually go into the office (I haven't left my house since the pandemic, so my appointment was just a phone call this last time and not conducive to lots of questions unrelated to my immediate treatment). PDSA is still recommending that ITP patients get the vaccine because the risks of getting the virus are so severe! I am sure that his study is a VERY SMALL one because everything is happening right now and so new. Many ITP patients are not eligible for vaccination anywhere yet, so most of our cohort is in the waiting pool to get one. Fingers crossed that it works well for all who get it, and we have several people just on these forums who are doing well with it, which is a hopeful sign for the larger population!

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ITP and Covid-19 2 months 3 days ago #70636

  • momto3boys
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MelA wrote: poseymint my immunologist told me not to get the Shingrix vaccine as it had not been studied in those of us with autoimmune disorders. I've had shingles 2x.

Funny, I wasn't asked about bleeding disorders when I got my Pfizer yesterday - just if I'd had an anaphlyxis [sp?] reaction to a vaccine.

You know, I just feel getting the vaccine is better than ending up with a breathing tube in the hospital - I didn't consult with my hematologist, just put my name on the list for the vaccine.


Absolutely with you on the superior to a breathing tube! My husband has had two of his aunts die from COVID-19, so making sure his mother got her shot had us scouring options in all of the counties in our state. I was going to go for a shot if I had any opportunity as well (this was before I got the bad symptoms).
Congrats on your shot!

My whole family signed up with our local health department for a vaccine, and one of the pre-screening questions asked about bleeding disorders. From the explanation, I believe it was just to know whether they needed to do something with the needle and to put pressure on the injection site for a longer period than normal afterwards. I don't think it was screening anyone out from receiving one from the language that they used.

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ITP and Covid-19 2 months 3 days ago #70637

  • momto3boys
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poseymint wrote: In California they are now vaccinating health care workers and folks over 75. I work in home health care so was able to get my 1st dose of Moderna on Jan 22. I was very surprised that I had almost no side effects, felt fine for 12 hours then some achiness/myalgia, slight headache that night. It was nothing. I took 2 Tylenol before bed and felt good the next day, even went swimming. My arm was sore, I still have a bruise but thats because my platelets are only 19. Looking forward to getting the second dose.

<snip>
The Covid vaccine didn't seem to affect my counts. They were 19 a few days before the vaccine, 18 the next week, and 19 following week.
RE: the doctor who died after the vaccine in Florida. I believe his wife's story that he got a severe case of refractory ITP after getting the vaccine and he died of a brain hemorrhage caused by refractory ITP. It totally makes sense because people get ITP from vaccines, a number of people on the forum have said their ITP came after a vaccine. That is a sad story, it seemed they couldn't do anything to get his counts up.
I don't personally worry about my counts going lower from a vaccine because my ITP is not refractory, there are drugs that would get my counts up. But if I wasn't already on medication, I would be concerned because a drop in counts might cause an ITPer to have to start on medication. And you never know where that path will lead you. Stay safe everyone!


Congratulations on your vaccine and good outcome. I think it is likely to be a small pool of patients that will have issues, and I'm hoping that if I can get my counts up out of the symptom range for me and more stable that I can become eligible to get one as well.

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