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International ITP Update Meeting, London

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9 years 8 months ago #44547 by Ann
I attended this conference and it was very interesting. However, I was acutely aware all the way through that what was said was merely each speaker's opinion and there was little that was really fact.

What did seem to be fact was that there is now accepted to be two types of ITP, antibody mediated and cytotoxic T-cell (killer) mediated. Each has its own mode and its own treatment options. Antibody mediated seems to respond to rituximab, IVIG and cyclophosphamide while T-cell mediated responds to steroids, mycophenolate and ciclosporin.

It was interesting that Terry Gernsheimer from the US talked about her studies with the indium platelet test and how successful it was at predicting splenectomy success and how it was agreed by everyone there that it was cost and insurance companies that stopped the test from being available in America. One speaker said that it was bordering on abuse to undertake a splenectomy without an indium test.

One thing that people may find useful is that every graph of Nplate treatments goes up and down all over the place, so it really is normal to fluctuate a lot. It's the general trend that's important. Also when Nplate pushed patients into remission or partial remission, which it was seen to do a lot, it took an average of 2.3 years. So be patient, people!
The following user(s) said Thank You: Sandi, CindyAnn

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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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9 years 8 months ago #44550 by Sandi
Replied by Sandi on topic International ITP Update Meeting, London
I just read an article last week about the two types of ITP. Now I can't find it. Hopefully, treatments will start to be geared towards ITP types instead of blindly trying to see what works. That would be huge progress!

It is a shame that we can't get the Indium here. I agree, it would be very useful; it could save many spleens. I still have a problem with the wording "predicts success" as I think it more accurately predicts possible failures. Just semantics.

Interesting info on N-Plate!

You were lucky to be able to attend, Ann! Thanks!

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9 years 8 months ago #44555 by Rob16
Replied by Rob16 on topic International ITP Update Meeting, London
Sandi, are you referring to the most recent article you posted here:

pdsa.org/forum-sp-534/6-general-itp-discussion/16141-new-articles-posted-here-update-10-10-14.html?start=80#44284

or were you thinking of something else?

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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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9 years 8 months ago #44565 by Sandi
Replied by Sandi on topic International ITP Update Meeting, London
I moved this topic because it should really be in the Announcements and no one can discuss it there. It's now in two places.

Rob, I'm not sure. I was thinking it was from Bloodjournal.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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9 years 4 months ago #46889 by EmilyK
Replied by EmilyK on topic International ITP Update Meeting, London
I hope the information was wrong! I have responded to steroids, half way through rituxan and had no response to IVIG. I will be so disappointed if rituxan does not work. I do agree that it would be so wonderful if they could figure how a "type" of ITP and treat that "type" instead of getting pumped full of toxic junk and hoping for the best.

Thanks for the information.

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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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9 years 4 months ago #46892 by Sandi
Replied by Sandi on topic International ITP Update Meeting, London
Emily:

I responded great to both Prednisone and Rituxan. Don't worry about that prediction.

ITP research has come a very long way in the past 10 years. It may not seem that way to someone new to it, but believe me, I have seen many, many breakthroughs. You should have been around before!

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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9 years 4 months ago #46893 by EmilyK
Replied by EmilyK on topic International ITP Update Meeting, London
Thank you, as always, for being so reassuring. I love this forum but I feel so alone during my 'normal' day. I also see how fortunate i am that even though my counts are all over the place, I have minimal symptoms. I look forward to the day i can reassure someone that it will actually be ok.

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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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9 years 4 months ago #46901 by Sandi
Replied by Sandi on topic International ITP Update Meeting, London
You'll soon forget about during your normal day and just have a day filled with co-workers, paperwork and clients. In the meantime, work is a great distraction.

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