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New treatments?

  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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7 years 3 months ago #58786 by Kelirae24
New treatments? was created by Kelirae24
Just curious if anyone's heard of any new treatments supposed to be coming soon?

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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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7 years 3 months ago #58787 by Sandi
Replied by Sandi on topic New treatments?
Keli - Poke around on the PDSA FB page. They have listed a few over the past few weeks/months.

www.facebook.com/plateletdisorder/

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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7 years 3 months ago #58795 by Hal9000
Replied by Hal9000 on topic New treatments?
Was looking over the FB page and saw this link to "Platelet desialylation correlates with efficacy of first-line therapies for immune thrombocytopenia" study, dated February of this year. Pretty new.

What they came up with was that those that do not respond to either steroids or IVIG (first line treatments) have unusual platelets. The platelets have been ' desilylated '. How that happens appears to be a mystery. The row labeled 'NR' of Table 1 really show this relation well.

At the end, the author(s) says that ' Tamiflu ' is a inhibitor of certain desilylations - suggesting it may increase the effectiveness of steroids and IVIG in those normally unresponsive.

In trying to speculate what is going on, I wonder if the immune system / body is doing this desilylation because it thinks platelets are the flu itself. I guess, that wouldn't be too surprising. Unfortunately I didn't see anything which might suggest why some folks (eg myself) respond to IVIG and not steroids. Or, vice versa. Blah.

Has anyone ever taken Tamiflu and had their counts go up as a result? A quick search on PDSA suggest the association is true. Take a look at this thread from two years ago. Interesting read. Count went up to 256 - which was a record for that person. Wow.

At this point, I wonder if Dapsone is somehow related. Rob?? And then there is 'rescue' therapy. Folks who are non responsive to IVIG might suddenly become very responsive when combined with Tamiflu.

Ok Keli, how is that for new stuff?

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7 years 3 months ago #58798 by Margaret k
Replied by Margaret k on topic New treatments?
Where would the flu vaccination fit Into this Hal? My ITP started a few months after my first flu jab. I am resistant to both steroids and ivig.

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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7 years 3 months ago - 7 years 3 months ago #58799 by Hal9000
Replied by Hal9000 on topic New treatments?
Well, isn't flu vaccination where they give you dead flu microorganisms? Your immune system learns the flu type from consuming and removing the dead flu? If you did indeed get ITP from a flu vaccination, and are unresponsive to first line treatments, sounds like that is more evidence to support the ideas presented in the study.

Here you were probably thinking you were in a poor situation with failed first line treatments from having 'GPIb-IX' type of ITP. Right now it sounds like researchers may be working hardest on this very type of ITP. Tamiflu being a new tool in the arsenal. I wouldn't be surprised if they came out and said something like this. You need to take a Dex pulse while simultaneously taking Tamiflu, because you will respond strongly and it might put you into remission. Or, even better, if you get into remission taking low dose Tamiflu will keep you into remission. I don't really know though. Just some ideas...

In a related note, I did find out that there is a natural neuraminidase inhibitor - which is what Tamiflu is. The natural inhibitor is 'black elderberry'. I bought some elderberry cough and flu tablets at the store but their strength is very weak. May get stronger stuff to try. I don't think I have GPIb-IX type of ITP (I respond to IVIG) but apparently all ITPer's have some amount of desialylation going on. So for me at best the benefit might be slight.

If the 'crazy' level on this subject isn't high enough already, here is a step higher. If I'm reading this study correctly, desialylation is going on in the liver. And also, platelet destruction is occurring in the liver. That would then suggest why one would be refractory to steroids and IVIG. Fairly sure the mechanisms for those drugs target platelet clearance in the spleen and not the liver.

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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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7 years 3 months ago #58803 by Sandi
Replied by Sandi on topic New treatments?
All I know is that many vaccines can trigger ITP based on the package inserts.
This is only one type of flu vaccine:
Blood and lymphatic system disorders
Thrombocytopenia
labeling.csl.com/PI/US/Afluria/EN/Afluria-Prescribing-Information.pdf

Here is a large list of many other vaccines:
www.vaccinesafety.edu/package_inserts.htm

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7 years 3 months ago #58804 by Margaret k
Replied by Margaret k on topic New treatments?
That's all very interesting. My indium scan showed platelet destruction in both spleen and liver so I think I must be the GPIB-is type. I am however resistant to Dex too( never felt so awful to no avail). I's good to know that if my response to Promacta goes downhill again Tamiflu might be a possiblity.Don't think I want to experiment with it at this point.

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