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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.
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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
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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?
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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.
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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!
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