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ITP & Vaccine 1 month 4 weeks ago #71723

  • Smullen44
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Hello to All,
I'm a new member of this site and am wondering if any members who have ITP has taken the vaccines successfully.
I have ITP and took the first dose of Moderna vaccine when my platelets were at 67K. I felt fine except for being more tired than usual. Several days afterward my platelets dropped 27,000 points to 40K. I have hesitancy about taking the 2nd shot, because of the drop
We hear that some have developed ITP after taking the shot and have had bad or deadly reactions, but I have yet to see any mention of those with existing ITP having bad reactions. So I wonder if maybe this info is being held back from the public, or if I've just missed seeing it. Further info: I have diabetes controlled through diet, and peripheral neuropathy. Thank you for any replies I may receive.

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ITP & Vaccine 1 month 4 weeks ago #71726

  • poseymint
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My platelets dropped a bit after the second Moderna vaccine. They were low at 19 and dropped to 9 with no bleeding symptoms. My counts came back up with a bit more Nplate but I imagine they would have come back on their own.
I have had some bad reactions to vaccines because I have other autoimmune disorders (lupus/sjogrens) so my immune system tends to over-react, so I was very nervous like you. But I found the Moderna vaccine to be very easy! I was a bit achey, myalgia the first night, no fever but felt a bit hot and cold. Really it wasn't bad at all- I was so surprised.
I just think getting Covid is so much worse than a little platelet drop. I know one person who was healthy and died of it rather quickly, there was nothing the hospital could do to save her. ps I have peripheral neuropathy too and didn't have any lingering symptoms from the vaccine. I felt a bit off for 24 hours and then fine. I honestly couldn't believe it was that easy.
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ITP & Vaccine 1 month 4 weeks ago #71727

  • gozorakgogo
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I am so sorry that you have experienced the drop. I received both Pfizer injections back in March and my platelet level remained at around 100 where it has been since last november(was diagnosed last July 2020 with a level of 2). I plan on getting the 3rd dose any day now as soon as I can arrange it.

My understanding is that only the J&J vaccine has had an FDA tag alerting the public(primarily women under the age of 50) of the potential for developing Thrombosis with thrombocytopenia syndrome (TTS) in the aftermath of receiving the vaccine. Out of the nearly 14 million doses of the J&J Vaccine given.
there were 42 such instances. There have been only 3 such cases with the Moderna vaccine out of 339 million doses of that vaccine given. In both cases it is extremely rare.

www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/adverse-events.html

What we also have to consider is the impact of getting Covid on our platelet levels as there have probably been more instances of platelet drops from the virus than the vaccines. I dont think any information is being intentionally held back. There is a ton of information from legitimate medical institutions and organizations on the web in regards to the potential impact of both Covid and the vaccines on platelet levels based on actual cases. Government agencies such as the FDA have a much higher threshold for issuing warnings however than doing so based on random instances being reported
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ITP & Vaccine 1 month 3 weeks ago #71734

  • Smullen44
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Thank you so much for replying to my post and for the information you provided. It's amazing how helpful and calming it is to hear of another's experience. It's great that it all went well for you.
Sue

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ITP & Vaccine 1 month 3 weeks ago #71735

  • Smullen44
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I appreciate your response to my post. The statistics are reassuring so once my platelets are at a better level I'm going to go ahead with my second shot. (Today's blood test showed a platelet drop of 7,000, but I know they'll eventually go back up).
Smullen44

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ITP & Vaccine 1 month 3 weeks ago #71744

  • MelA
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I have had ITP since 1989 - by the end of February I had had both Pfizer vaccines and I am very thankful for them!! I will be getting the booster as soon as they tell me to get it!! I had no problems with platelets, but then I decided not to test before or after the vaccines - all I know is I would do it all again in a heartbeat!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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ITP & Vaccine 1 month 3 weeks ago #71750

  • Smullen44
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Thanks for the reply MelA, I can imagine how nice it must be to be fully vaccinated. My Hematologist wants my platelets to be at 60K before getting my second vaccine, so I impatiently wait as my numbers fluctuate up and down. Soon as I get close to the target number I'm off to have the 2nd shot!

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ITP & Vaccine 1 month 3 weeks ago #71753

  • 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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Smullen44
My count dropped after both doses but I don't care. Better than ending up on life support on ITU or even worse dying. I shall get my booster dose as soon as I can irrespective of my platelet count.
I think your haemo is very wrong. Protecting your platelet count rather than protecting you from possible death from a virus.
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ITP & Vaccine 1 month 3 weeks ago #71755

  • Smullen44
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I agree with your statement as over the past few days I've just about decided to go ahead and take the second vaccine dose. In addition to my doctor's recommendation to wait for a better number, I've been a little uneasy hearing reports of platelets dropping to zero. I realize that the occurrence is very rare and I just need to get over it and take the the shot.
Thank you for your input!
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ITP & Vaccine 1 month 2 weeks ago #71781

  • Terra
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I haven't signed on in quite a while. My son (who is now 14) has had ITP for about 6 years now. No remission insight.
Splenectomy, countless IVIG, and now on routine Promacta.
At first his Hematologist (many many months ago) said hold off on the Covid vaccines as there was not enough data yet about the effects on patients with ITP already.
It appears that there is new data coming out finally that the benefits of the vaccine outweigh the risks.
I've sent another message to his hematologist to get their input now.
But I am ready to vaccinate my son because I don't want him getting this (or at least want to reduce the risk).
I'm a teacher (fully vaccinated, as well as my other 13 year old son).
Most all of the cases between teachers and students here are among un-vaccinated people.
I don't want to bring anything home to him. (He is currently doing Florida Virtual School)
This is all so overwhelming, not to mention that their father unexpectedly passed away on August 20th.
So I'm nothing but a bundle of nerves.
It is reassuring to come here and read positive posts.

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ITP & Vaccine 1 month 2 weeks ago #71782

  • poseymint
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Terra,   So sorry your sons lost their father, that must be very hard for them. Yes, you have good reason to be distressed. All the children have been through so much.

Just my thoughts about your 16 yr old and the vaccine- If he is on Promacta and its working to keep his counts up to a safe level, that is good. He has a treatment that works! If his counts drop some from the vax they might come back of their own. Or you might increase the dose a bit until they come back. Many ITP people have no problems from the vaccine. Take care of yourself and best wishes.

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