ITP since 2014. Retired nurse. 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.
Thank you received: 620
I had a 4 vaccine course of Hep B vaccinations plus 2 boosters within the last 20 years, the last booster being 3 years ago plus Flu jabs annually over the last 6 years since I was diagnosed with ITP. No reaction to any of them
I needed a tetanus booster in 2002 after my hand met a very rusty wire - that booster sent my count to the gutter and I required treatment, refused pred & had 1 IV of Win-Rho.
Also my ITP was triggered in 1989 very shortly after receiving a gamma globulin injection.
My US hematologist told me not to get the hepatitis vaccines while we were living in Hong Kong - I didn't ask my HK hematologist since she didn't know much.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
I think it's accepted that vaccinations can trigger it. (PDSA even says it on this page: pdsa.org/what-is-itp.html) The trigger for my ITP was the HPV vaccine. I ended up in the ER with a count of 1 only 4 days after getting the 2nd shot. My hematologist has told me we'll have to decide together if we're brave enough to ever get the final dose because it could trigger another crash. Now that I've had ITP for a while and am managing it, I definitely think there were many things in my life that set me up for an auto-immune disease (use of antibiotics, surgeries, trauma, diet, etc). My theory is that the vaccine was just the straw that broke the camel's back. I'm very careful about who I tell this to because I am in no way against vaccines and do not want to put that out there. (For example, my hematologist and I agreed that I should get the COVID shot when it's available. I also get a flu shot every year and it doesn't affect my counts.) I have considered filing a case with the National Vaccine Injury Compensation Program. I found a lawyer who thinks I have a case, but I'm not sure that I want to go through all the hassle of getting my medical records, submitting them, and then debating with the government to see if they will a) accept any responsibility or b) provide any compensation. I know one other person with ITP who is doing this. She's the one who told me about the VICP.
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