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Anybody know if new treatments are in the works?

  • 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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9 years 9 months ago #53793 by Kelirae24
Just curious if anyone knew of any new treatments coming soon? I'm over all the ones we have lol as I'm sure a lot of us are.

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9 years 9 months ago #53795 by Rob16
Treatments for ITP in clinical trials can be found here:
clinicaltrials.gov/ct2/results?term=itp&Search=Search

Protalex, Inc. has a new product undergoing clinical trials, code-named PRTX-100:
pdsa.org/forum-sp-534/7-treatment-general/28803-new-treatment-protalex.html#49971
Something about staphylococcus proteins

The other new drug is fostamatinib, which is in phase 3 trials. Mrs. B was part of a clinical trial for it. I do not know if she was a "control" subject of if she had negative results, but apparently they are having some success as trials are continuing

There is some renewed interest in Dapsone, an old antibiotic which is less commonly used for ITP.
It has been widely used for leprosy, so its side effects are well known.
The good news is it has a pretty decent success rate EVEN WHEN OTHER ITP TREATMENTS DON'T WORK.
The bad news is that rarely it can be very DANGEROUS IF NOT PROPERLY MONITORED.
Dapsone has been thoroughly discussed on this message board, especially here:
pdsa.org/forum-sp-534/7-treatment-general/28423-dapsone.html#49299
and here:
pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/27939-hopeless-depressed-suicidal.html#49348
In a phase 3 trial, Dapsone will be undergoing more thorough investigation for efficacy and safety when used for ITP.

Papaya leaf extract is a natural remedy which has generated some interest on these pages.
The "Search" tab will help you find discussions of it.
Papaya leaf extract been shown to increase platelet and RBC counts in animals.
A study has shown that papaya leaf increases platelets in Dengue fever with thrombocytopenia:
medind.nic.in/ice/t15/i3/icet15i3p109.pdf
Individual cases where it has been used for ITP are described here:
www.bloodjournal.org/content/126/23/4660.abstract
There are no clinical trials listed, and no large studies on using papaya leaf for ITP.

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  • 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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9 years 9 months ago #53801 by Kelirae24
Thanks rob!

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  • mrsb04
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  • 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.
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9 years 9 months ago #53804 by mrsb04
Initially I had no idea if I was getting Fostamatinib or the placebo in the RCT.
However after 12 weeks with no response I was transferred to the open label trial and unfortunately had no response on that by week 16 of it so was withdrawn the trio.
The other lady who signed up alongside me didn't respond either during the RCT but until has seen positive results since moving onto the open label trial.

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  • Melinda
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9 years 9 months ago - 9 years 9 months ago #53806 by Melinda
Regarding papaya leaf - probably women of child bearing age should check out the post in the pregnancy section that Erica posted 3 years ago:

pdsa.org/forum-sp-534/23-everything-pregnancy/27036-papaya-leaf-tea-to-boost-platelets-while-pregnant.html#53729

3 years 1 week ago #31719

eklein
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Posts: 1285
Thank you received: 157


I'm not sure any of this information is reliable, but there are quite a few warnings out there about papaya leaf and pregnancy, right on the pro-papaya leaf websites, for example:
www.herbalpapaya.com/papaya-frequently-asked-questions.html
Is Papaya Leaf safe in Pregnancy?
If you are pregnant please consult your doctor before you take any of our products. Papaya leaf in high doses is known in India to have abortive effects during pregnancy.
and
welltellme.com/discuss/index.php?topic=19027.0
Pregnant women should avoid Papaya, as it can be a uterine stimulant (papain apparently dissolves a protein(s) responsible for adhering the newly fertilized egg to the wall of the uterus)
papayaleavesforcancer.com/
CAUTION: This enzyme is not recommended for
pregnant or nursing mothers or those who are on any kind of blood thinner. As with any
powerful enzyme, please consult your doctor to consider its safety for your body. Do not
offer to children without your doctor's advice.

Erica

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9 years 9 months ago - 9 years 9 months ago #53818 by Rob16
There is a new thread that relates to the use of an immunosuppressant for treating various immune cytopenias (including ITP). The drug is sirolimus AKA rapamycin AKA Rapamune.
Here is the thread:
pdsa.org/forum-sp-534/7-treatment-general/29096-need-input-on-a-drug.html

I am cross-posting here a new study on the drug:
www.bloodjournal.org/content/127/1/17
Sirolimus is effective in relapsed/refractory autoimmune cytopenias: results of a prospective multi-institutional trial
Key Points
  • Sirolimus monotherapy is a safe and effective steroid-sparing agent, improving autoimmune cytopenias in highly refractory patients.
  • Sirolimus is particularly active in ALPS and should be an early therapy option for patients who require chronic therapy.

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