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Co-workers with ITP: Coincidence?

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13 years 5 days ago #32269 by Rob16
Co-workers with ITP: Coincidence? was created by Rob16
My wife and a co-worker, just 20 feet away, both developed ITP at roughly the same time. They work in an infectious disease clinic, and both got their flu shots at work. The annual rate of incidence for ITP is 66 per million. Can this really just be a coincidence? Is this just the tip of the iceberg?

There could be a bad batch of vaccine.
There could be a workplace environmental hazard.

I don't know where to take this.
To the employer?
To the hematologist?
To the CDC?
To Erin Brokovitch?

I would really appreciate any thoughts or advice,
as to what could be causing this,
as to how to proceed.
Thank you,
Rob

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13 years 5 days ago #32273 by Vdeutsch85
Replied by Vdeutsch85 on topic Co-workers with ITP: Coincidence?
That is crazy! I would probably start with the hematologist and see what he/she says. He or she will have good advice on how to proceed.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 4 days ago #32274 by Sandi
Replied by Sandi on topic Co-workers with ITP: Coincidence?
Bad thing is you will probably never know. How long have they both had it and what are their counts? A temporary reduction in counts after a flu shot wouldn't be all that alarming, but if it's more than that, it could be more than coincidental.

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13 years 4 days ago #32283 by lili
Replied by lili on topic Co-workers with ITP: Coincidence?
When I was diagnosed, my coworkers told me that my boss had ITP. I'd worked there for about a year, and I think his had been diagnosed for more than a year. He didn't have a very severe case and never had treatment.

Sometimes things are just coincidences.

Lili
The following user(s) said Thank You: eklein

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13 years 4 days ago #32285 by Rob16
Replied by Rob16 on topic Co-workers with ITP: Coincidence?
Vdeutsch85, Sandi, Lili, thanks for your replies.

Yes it really is crazy. The funny thing is they didn't know about each other's ITP until yesterday.
My wife, Ellen, will certainly contact her hematologist, and there is also a hematologist at her clinic she can talk to.

We will wait to see what they say, but I won't be satisfied if this is not taken seriously, at least reported as a possible flu vaccine issue.

Lightning does strike twice in the same place, but usually that means that something is acting as a lightning rod. We may never find out what that is, but if we do, just maybe that knowledge can help in their treatment, or maybe help keep someone else from getting ITP, if there is an ongoing environmental exposure.

Ellen works all day, every day, with AIDS patients, and is bombarded with every opportunistic infection you can imagine: HepB, HepC, CMV, MRSA, and everything else her immune-compromised patients are carrying around. She tests negative for all the obvious, but did have a MRSA sinus infection last year, and pneumonia the year before. I worry about the possibility of having to take treatments that are immuno-suppressive while working in that environment, and cannot imagine her ever working in that environment after a splenectomy. She cannot imagine NOT working there, as it is a true calling for her (I think of it as caring for lepers, as her AIDS patients are largely outcasts from society). I do wonder if the constant challenges to her immune system could be the source of the ITP.

The flu shots were in October, and the bruising came on gradually, hard to say when, but certainly in February and March, with low platelet labs (39) April 2nd. HD metthadexasone started 4/11 when platelets dropped to 26. Back up to 138 on 4/15, then repeat of HD-DXM on 4/25 with platelets of 38. Next step IVIg, says the doc, then spleen.

I am reminded of a phrase from a prayer from St Augustine: "Frail is our vessel".
How frail, indeed.

Frail is our vessel, and the ocean is wide;
but as in your mercy You have set our course,
so steer the vessel of our life towards the everlasting shore of peace,
and bring us at length to the quiet haven of our heart's desire,
where You, 0 God, are blessed, and live and reign for ever and ever.
---Saint Augustine

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 4 days ago - 12 years 11 months ago #32287 by Sandi
Replied by Sandi on topic Co-workers with ITP: Coincidence?
There are treatments that don't compromise the immune system. N-Plate and Promacta would be her best bet if she wants to continue to work where she does and keep her immune system intact. IVIG is a very temporary treatment for most and generally lasts a week or two. It's way too soon to start talking splenectomy.

I've some across many people in my personal life who have had ITP, so to me, it's not that rare. My own sister had it years before I did. If someone is vaccinated often, it could trigger any number of autoimmune issues in predisposed individuals.

I once reported a drug side effect myself to the FDA since my doctor wouldn't do it. The side effect occurred during the treatment. There is a place on their web site where you can do that. I think many side effects go unreported and that could be why the percentage rate for a particular side effect is shown as low. It's hard to prove though since she was diagnosed months later.

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12 years 11 months ago #32381 by RHofm50129
Replied by RHofm50129 on topic Co-workers with ITP: Coincidence?
I was just diagnosed with ITP and as rare as it is, my neighbor said he had it 30 years ago. Odd to find someone across the street who had it.

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12 years 11 months ago #32448 by sem40
Replied by sem40 on topic Co-workers with ITP: Coincidence?
The first co-worker I told about my itp diagnosis looked at me surprised and said "that's what I have". I work as a grants administrator in an immunology lab. She's an immunologist. I had just been diagnosed and she had the condition since childhood. It was just a strange coincidence. I sort of suspect that I got itp when I started working in a hospital and they made me get a flu shot, tb test and a MMR booster (since my childhood medical records didn't specify that I got the 3 rounds of shots for that test). I currently refuse to get the annual flu vaccine and the hospital makes me wear a mask until flu season is over. I think it's natural to look to environmental factors with this type of disorder, especially since environmental factors are theorized to play a part in the development of autoimmune disorders. My mother and sister were both diagnosed with different autoimmune diseases when they turned 30 as well so I feel the genetic predisposition plays a significant enough role that I guess I don't over analyze the possibilities as much as I probably would have otherwise.

I do think you should report this coincidence though. Every bit helps. Here's a link to the governments vaccine adverse reporting site.


vaers.hhs.gov/index

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 11 months ago #32463 by Sandi
Replied by Sandi on topic Co-workers with ITP: Coincidence?
Sem:

You summed it up well, that's exactly the way I think. Genetic predisposition + environmental trigger = autoimmune disorder. I've seen so much of it in my own family that I don't think much of it either. So many of the things that we normally do and don't think much about (like vaccines), can trigger any number of issues. I avoid vaccines whenever I can too. My daughter (has Graves) works in a hospital and always has her titers checked rather than get an unnecessary vaccines.

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