CDC and FDA recommend US pause use of Johnson & Johnson's Covid-19 vaccine over blood clot concerns

[Gingergrrl]

Good conversation!

Thanks and likewise!

You're correct. Pfizer and Modern both have PEG.

Thank you for confirming this and it matches what I found online tonight.

I'm tempted to ingest something with PEG to see what happens, but that's probably not a great idea! I think my only reactions have been when applied to the skin.
I'm also trying to be certain on what ingredients of CT Contrast dye I'm allergic too. They only told me I'm allergic but not which ingredient. Presumably the iodine.

If you think you are truly allergic to PEG where it might cause anaphylaxis, please don't do this unless you have an EpiPen! If you know the reaction will not be anaphylaxis, then please at least have Benadryl (or whatever strong H1 antihistamine works best for you). If you feel like you really need to test it, you can literally start with a toothpick amount where you grind up the ingredient and dip a toothpick in it and just touch it to your mouth.

As far as contrast dyes, I am also allergic. My (former) MCAS specialist told me that even if my MCAS went into remission where I never had another allergic reaction as long as I lived, that I should still avoid contrast dyes. This has stuck w/me and now he is retired (with no way to contact him) and I wish that I had gotten more info! I do not know if he meant only iodine dyes (for CT scans) or also MRI dyes w/gadolinium. In any case, I will avoid them both forever unless it were a life or death situation.

-In the particular case of adenovirus vaccine induced DIC, the cause is the induction of PF4 auto-antibody that activates platelet aggregation.

I was going to tag you into this thread @pattismith but you beat me to it! You explained it much better than I did and I assume when you mentioned the "PF4 autoantibody" that this means that the blood clots/low platelets reaction from the adenovirus vaccines is considered to be autoimmune? That is what I am finding and I am still planning to quote from the links from @Booble as I mentioned above.

 

[Gingergrrl]

These quotes are from a link that @Booble posted in post #12 in this thread:
https://www.nejm.org/doi/full/10.1056/NEJMoa2104840?query=TOC

Several cases of unusual thrombotic events and thrombocytopenia have developed after vaccination with the recombinant adenoviral vector encoding the spike protein antigen of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) (ChAdOx1 nCov-19, AstraZeneca).

We assessed the clinical and laboratory features of 11 patients in Germany and Austria in whom thrombosis or thrombocytopenia had developed after vaccination with ChAdOx1 nCov-19. We used a standard enzyme-linked immunosorbent assay to detect platelet factor 4 (PF4)–heparin antibodies and a modified (PF4-enhanced) platelet-activation test to detect platelet-activating antibodies under various reaction conditions. Included in this testing were samples from patients who had blood samples referred for investigation of vaccine-associated thrombotic events, with 28 testing positive on a screening PF4–heparin immunoassay.

Of the 11 original patients, 9 were women, with a median age of 36 years (range, 22 to 49). Beginning 5 to 16 days after vaccination, the patients presented with one or more thrombotic events, with the exception of 1 patient, who presented with fatal intracranial hemorrhage.

Conclusions: Vaccination with ChAdOx1 nCov-19 can result in the rare development of immune thrombotic thrombocytopenia mediated by platelet-activating antibodies against PF4, which clinically mimics autoimmune heparin-induced thrombocytopenia. (Funded by the German Research Foundation.)

 

[pattismith]

These quotes are from a link that @Booble posted in post #12 in this thread:
https://www.nejm.org/doi/full/10.1056/NEJMoa2104840?query=TOC

yes this is an autoimmune reaction to the vaccine, this is what I understand too after reading the interesting article Booble posted

 

[Gingergrrl]

yes this is an autoimmune reaction to the vaccine, this is what I understand too after reading the interesting article Booble posted

That was my interpretation, too, and not just from Booble's excellent articles but from other research online and also from doctors that were interviewed on CNN.

Are you going to get the vaccine @pattismith? And if so, will you be able to get Pfizer or Moderna? (assuming that you have not already gotten the vaccine). I think I read another post that you were trying to get Pfizer but I might be confused.

 

[pattismith]

That was my interpretation, too, and not just from Booble's excellent articles but from other research online and also from doctors that were interviewed on CNN.

Are you going to get the vaccine @pattismith? And if so, will you be able to get Pfizer or Moderna? (assuming that you have not already gotten the vaccine). I think I read another post that you were trying to get Pfizer but I might be confused.

yes, that's right, I got the Pfizer first shot on 6th of April and I feel fine.
Note that I was fine during 2 weeks after the flu vaccine when I was hit by a bad bad reaction, so I don't know if i will be still fine in 1 week....
The RNA vaccine was my choice, so I am happy I got it

 

[Gemini]

A New York Times article Feb 8 2021 reported cases of low platelet disorder following both Moderna & Pfizer vaccines. Worth a read...

A Few Covid Vaccine Recipients Developed a Rare Blood Disorder - The New York Times (nytimes.com)

The autoimmune disorder which attacks platelets, Idiopathic Thrombocytopenia (ITP), I mentioned earlier because a family member has it can be triggered by an infection or vaccine.

It's estimated to affect 50,000 to 200,000 people in the US which is why I think FDA & CDC should address it in the context of a pre-existing condition.

@Gingergrrl @Bobble @pattismith

 

[pattismith]

@Gemini ,thank you for tagging me.
I had immune neutropenia after the flu vaccine last october, so I keep in mind this immune thrombopenia can happen with RNA vaccine.

I wish we could know the recommended treatment Dr Bussel is talking about?

 

[Booble]

@Gemini ,thank you for tagging me.
I had immune neutropenia after the flu vaccine last october, so I keep in mind this immune thrombopenia can happen with RNA vaccine.

I wish we could know the recommended treatment Dr Bussel is talking about?

I found the recommended treatement ....and printed it out and have it in a safe spot in case myself or anyone I know needs it!

 

[Gingergrrl]

yes, that's right, I got the Pfizer first shot on 6th of April and I feel fine. Note that I was fine during 2 weeks after the flu vaccine when I was hit by a bad bad reaction, so I don't know if i will be still fine in 1 week....

That is great news! Can you update us how you are doing when you reach the 2-week mark?

The autoimmune disorder which attacks platelets, Idiopathic Thrombocytopenia (ITP), I mentioned earlier because a family member has it can be triggered by an infection or vaccine. It's estimated to affect 50,000 to 200,000 people in the US which is why I think FDA & CDC should address it in the context of a pre-existing condition.

I completely agree that the FDA & CDC should address this as a pre-existing condition. They go out of their way to list all of the possible pre-existing conditions for COVID itself but they seem to be hiding this info when it comes to the vaccines.

I found the recommended treatement ....and printed it out and have it in a safe spot in case myself or anyone I know needs it!

Can you share a link for this (or is it better if I send you a PM)?

 

[Booble]

@Gingergrrl @pattismith
I think it's this link. Which is for the blood clot situation for Astra Zeneca but should be the same for J&J

https://gth-online.org/wp-content/uploads/2021/03/GTH_Stellungnahme_AstraZeneca_engl._3_22_2021.pdf

 

[Gingergrrl]

@Gingergrrl @pattismith
I think it's this link. Which is for the blood clot situation for Astra Zeneca but should be the same for J&J

https://gth-online.org/wp-content/uploads/2021/03/GTH_Stellungnahme_AstraZeneca_engl._3_22_2021.pdf

Thank you for this info and I just bookmarked it.

 

[pattismith]

@Gingergrrl @pattismith
I think it's this link. Which is for the blood clot situation for Astra Zeneca but should be the same for J&J

https://gth-online.org/wp-content/uploads/2021/03/GTH_Stellungnahme_AstraZeneca_engl._3_22_2021.pdf

Thanks a lot. It's very interesting, but the immune thrombocytopenia (ITP) from ARN vaccine is different than the immune disseminated vascular coagulation (DIC) from the adenovirus vaccines.

Here an article from Dr Bussels about ITP treatment

What Is the Optimal Treatment of ITP? - ASH Clinical News

;;

 

[Jennifer J]

I'm tempted to ingest something with PEG to see what happens, but that's probably not a great idea!
I think my only reactions have been when applied to the skin.

I too was tempted to try a little PEG to see what kind of reaction I'd have now. I had a reaction in the past.

My immunologist who specializes in mast cell told me not to get the vaccines with PEG in it even if it was a mild reaction that was had with PEG. I really wanted to get the Pfizer vaccine.

(I haven't been diagnosed with mast cell (yet?), we're rerunning tests and still trying to figure out what's going on.)

 

[Gingergrrl]

Thanks a lot. It's very interesting, but the immune thrombocytopenia (ITP) from ARN vaccine is different than the immune disseminated vascular coagulation (DIC) from the adenovirus vaccines.

Hi Patti, I want to make sure that I understood this. Are you saying that the RNA vaccines (Pfizer & Moderna) are causing ITP that is totally different and separate from the autoimmune blood clots/low platelets issue that is being caused by the adenovirus vector vaccines (AZ and J&J)?

 

[pattismith]

Hi Patti, I want to make sure that I understood this. Are you saying that the RNA vaccines (Pfizer & Moderna) are causing ITP that is totally different and separate from the autoimmune blood clots/low platelets issue that is being caused by the adenovirus vector vaccines (AZ and J&J)?

Yes, according to the few articles I read, the thrombocytopenia noticed after ARN vaccine and the one seen after adenovirus vaccine are different (although both are auto-immune)

ITP is a primary autoimmune attack destroying platelets (thrombocytes). No blood clot in this process.
Bleeding occurs because platelets fall under a critical level.
You don't need anticoagulant drugs to treat this disease.

DIC is primary thrombosis disorder: something triggers blood clots to happen in the vessels, that leads to platelets and clotting factors consumption.
In this case the fall of platelet is secondary to the clotting event.
Bleeding occurs when the platelets are two low.
Anticoagulant drugs (like heparin) are used to treat DIC, unless the platelets are too low.

DIC is not usually a primary autoimmune disease, and some specialists make a distinction between DIC and the DIC triggered by anti PF4 autoantibodies

This auto-immune DIC involving PF4 have a special name HIT (heparin induced thrombosis).
HIT was named this way, because these antibodies were discovered as an autoimmune complication in the DIC treatment with heparin.
This separation is important, because even though in both of them the low platelet count is secondary to the clotting events, the treatment is not the same:
heparin is used in classic DIC whereas in HIT you can't use it, so you need to fight the clotting with another drug.

Some specialist also make a distinction between HIT and Astrazeneca induced thrombosis, because heparin is not involved in the second.

In fact the auto-antibodies involved seem the same in both cases, but heparin as the power to activate them, and even to trigger them.

I'm sorry, I can't give a better and more synthetic explanation, it's a bit complicated

 

[Gemini]

@Gemini ,thank you for tagging me.
I had immune neutropenia after the flu vaccine last october, so I keep in mind this immune thrombopenia can happen with RNA vaccine.

I wish we could know the recommended treatment Dr Bussel is talking about?

Here's a March 9, 2021 article by Dr. Bussel describing several different ITP treatments given to 15 patients who developed thrombocytopenia following the COVID vaccine:

"Thrombocytopenia following Pfizer and Moderna SARS-CoV-2 vaccination"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8014568/

Don't know if one of the 15 was the patient described in the above NYT article, though.

A new NYT article yesterday April 17, 2021 reports 222 cases of adverse COVID vaccine reactions in the UK and three other European countries:

‘We Were Flying Blind’: A Dr.’s Account of a Woman’s J.&J. Vaccine-Related Blood Clot Case - The New York Times (nytimes.com)

@Gingergrrl @Booble

 

[Gemini]

Here's a March 9, 2021 article by Dr. Bussel describing several different ITP treatments given to 15 patients who developed thrombocytopenia following the COVID vaccine:

"Thrombocytopenia following Pfizer and Moderna SARS-CoV-2 vaccination"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8014568/

Excerpt:

Treatment for suspected ITP was described in 15 of the cases, including corticosteroids n = 14, intravenous immune globulin (IVIG) n = 12, platelet transfusions n = 8, rituximab n = 2, romiplostim = 1, vincristine = 1, and aminocaproic acid (Amicar) n = 1; combination therapy was used in most patients.

Initial outcomes were reported in 16 cases. An improvement in the platelet count was described in patients treated with platelet transfusion alone (n = 1), corticosteroids alone (n = 1), corticosteroids + platelet transfusion (n = 3), corticosteroids + IVIG (n = 3), corticosteroids + IVIG + platelet transfusion (n = 5), corticosteroids +IVIG + rituximab + vincristine + romiplostim (n = 1).

Interestingly the article notes some of the patients had pre-existing ITP.

 

[Gingergrrl]

Yes, according to the few articles I read, the thrombocytopenia noticed after ARN vaccine and the one seen after adenovirus vaccine are different (although both are auto-immune)

Thank you for explaining more about all of this, Patti, and I really appreciate it.

Here's a March 9, 2021 article by Dr. Bussel describing several different ITP treatments given to 15 patients who developed thrombocytopenia following the COVID vaccine:

Thank you also, @Gemini for the links to the articles. I am still trying to wrap my head around all of it!

Treatment for suspected ITP was described in 15 of the cases, including corticosteroids n = 14, intravenous immune globulin (IVIG) n = 12, platelet transfusions n = 8, rituximab n = 2, romiplostim = 1, vincristine = 1, and aminocaproic acid (Amicar) n = 1; combination therapy was used in most patients.

Initial outcomes were reported in 16 cases. An improvement in the platelet count was described in patients treated with platelet transfusion alone (n = 1), corticosteroids alone (n = 1), corticosteroids + platelet transfusion (n = 3), corticosteroids + IVIG (n = 3), corticosteroids + IVIG + platelet transfusion (n = 5), corticosteroids +IVIG + rituximab + vincristine + romiplostim (n = 1).

This is very interesting and the treatments for these vaccine-induced autoimmune ITP & DIC cases include the treatments that led to my remission (IVIG & Rituximab). I never had the specific issue here (blood clots and/or low platelets) but I had other obscure autoantibodies & autoimmune reactions that caused me severe POTS, muscle weakness, shortness of breath, and led to me being completely disabled for 4+ years.

All of this new info continues to reinforce my decision to decline the vaccine. Even though my mind is made up, I am constantly being asked (usually by very well-meaning people), "When are you getting the vaccine?" or "Have you had the vaccine yet?" and I know I will be responding to this question for the rest of my life and having to explain it.

Interestingly the article notes some of the patients had pre-existing ITP.

That completely makes sense to me. I suspect that there are millions of people across the world who have no idea that they have certain autoantibodies because they have never been tested. How would they know that they are pre-disposed until they encounter a trigger like the vaccine? (and others may know that they have ITP but not realize how dangerous the vaccine could be for them because all of this info is so new).

 

[Booble]

>>>All of this new info continues to reinforce my decision to decline the vaccine. Even though my mind is made up, I am constantly being asked (usually by very well-meaning people), "When are you getting the vaccine?" or "Have you had the vaccine yet?" and I know I will be responding to this question for the rest of my life and having to explain it.<<<

The "vaccine shaming" is tough. I 100% support vaccines, I'm not an anti-vaxxer and I encourage other people to get vaccines. It's hard when people don't really know (or believe) that your body works differently. To everyone it's just unfounded paranoia.

>>>>Interestingly the article notes some of the patients had pre-existing ITP. <<<

More interesting perhaps is that some DIDN'T.

 

[andyguitar]

I too was tempted to try a little PEG to see what kind of reaction I'd have now

This would not be a very good guide to how it would effect you as the vaccine puts the PEG directly into your blood. Testing it on your skin wont!