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ITP No longer iddopathic based on 2011 article

  • pshayK
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  • I am an adult with Chronic Primary Genetic ITP. I was diagnosed when I was 29 in 2003. I am one of the current administrators and founders of ITP-in pregnancy, a women's only Facebook group.
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13 years 2 months ago #30949 by pshayK
I read an article and wanted to post it here to receive your feed back:
www.ccjm.org/content/78/6/358.full
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13 years 2 months ago #30954 by vaughanderek
Replied by vaughanderek on topic ITP No longer iddopathic based on 2011 article
Thank you fo raising attention to this article a very informative piece of information. But am I missing something on the idiopathic bit? ITP is an autoimmune disorder diagnosed by the exclusion of all other possibilities there not being a single reliable test for the condition. In most cases how, why and where we acquire it remain unknown, that is,it is idiopathic in origin. Perhaps research will provide the answers to the idiopathic bit but this paper has nothing on that? Derek

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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 2 months ago #30958 by Sandi
ITP used to be called "idiopathic thrombocytopenia purpura". They recently changed it to "immune thrombocytopenia". It didn't change the meaning of the disorder, just that they don't consider it idiopathic anymore....it's autoimmune.

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13 years 2 months ago #30961 by grasshopper
Replied by grasshopper on topic ITP No longer iddopathic based on 2011 article
Sandi, I posted a question earlier today in the childrens section, but I think this could be part of an answer to my question. I wonder if you can finish my answer. Am I right in thinking that autoimune conditions don't go away but only go into remission? If so I am assuming that is also the case for ITP? I'm sure I've read that somewhere on here before?

The reason I ask is because my 6 year old daughter has had ITP with counts less than 20 for at least 5 years. Her consultant seems to think she will just grow out of it at some point. Do you think that is correct? Or is remission all that is possible?

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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 2 months ago #30977 by Sandi
That's a tough question. Technically, there are no cures for autoimmune disorders. There are treatments that can cause remission. Remissions can last weeks, months, years or a lifetime.

Yes, it is possible that a chronic ITP'er could go into remission and stay there for life. But truly, you can't ever say you have been cured (until the day you die and have not had a recurrence).

I've seen many people who were supposedly "cured" by a splenectomy but ended up with ITP again a few years later.
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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 2 months ago #31011 by Sandi
That is actually a pretty good article. I'm going to sticky it for now.

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13 years 2 months ago #31018 by Bella
Hello Grasshopper, Please look into vitamin K. It occurs in vegetables. We give our little one 50 mcg a day, everyday. Along with more greens in the diet. we bought it at the healthfood store, it was under 7.00 for 100 tabs.

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  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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13 years 2 months ago #31031 by karenr
I could understand most of the article, but I'm unsure what this means:
100 × 109/L (100,000/μL)

Hmmm--that wouldn't copy right. 100 x 10 to the 9th power over L--what is L?

I know it must be really obvious, but I can't even figure a way to google it!

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13 years 2 months ago #31057 by lili
L is litre. It should really be a small l. It's just a conversion from per microlitre to litre.

Lily

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