New treatment in process of development

www.youtube.com/watch?v=ov2JUHDpt58

WOW, thank you so much for sharing this one! It's so exciting. I'm going to google this one when I have some time. Here is the million dollar questions...when is available...and what are the side effects...

Very interesting. This would also be good for those ITPers who ask how do I explain ITP to family & friends.

I like that they have platelets shaped like guitar picks

Very interesting, I like that it says symptoms of ITP....bleeding, bruising, AND fatigue.

Interesting. I see that it is used also for RA, but with side effects.

I have a question: don't we need this Syk enzyme to get rid of other (bad) stuff? Is it ok to turn it off?

en.wikipedia.org/wiki/Syk

I usually don't go to Wikipedia but did this time as I could understand it

Norita:

That is the question! The process sounds great in theory but this kind of cell manipulation is a new frontier. Anyone here that would try it?

We keep asking for better treatments. They are working on them!

Yes... But, a bit like with taking the spleen out, it's targetting something that isn't actually malfunctioning. Quick glance at Wikipedia (first place I looked!) implies an abnormally functioning Syk is not a Good Thing, but in ITP it's not Syk that's wrong, it's the fact that the platelets are flagged up (excuse non-technical language) with antibodies. Syk is just doing its job.

So there are two knee-jerk concerns... i) what other useful things does Syk do that by inhibiting it we would lose out on? ii) even if it can be focused down to something so specific as needed for ITP (or other autoimmune diseases), can it be safely inhibited? (of course (ii) is a question for all treatments).

This is just healthy scepticism and curiosity on my part. Of course it's great that they're trying out new things, and it maybe this is a fruitful path to take.

(PS: What a great name... Syk!)

This seems like a completely new way of thinking about the treatment of itp. Hopefully the researchers are on to something here. It's exciting news!

Sandi,

Thanks so much for posting this. It was very informative. I'm curious as to what the side effects would be though.

-Kristina

Norita:

Some of the treatments available now manipulate things so that good cells are sacrificed to try to save platelets. Rituxan is that way...targets B cells and T cells which are helpful to fight infection. Win-Rho too....targets red cells to trick the body into leaving platelets alone. And splenectomy, as you said. Immunosuppressants are probably not much better. Only time will tell how turning off syk will affect people long term.

It is amazing how research is coming up with new ways to control ITP though. There has been more going on in the past 10 years than ever before. The newly diagnosed have more treatment options than people have in the past. This is good!

Kristina:

I have no idea what the side effects would be. Risk of infection maybe?

Sandi

Immunosuppressants are for sure no better, in the sense that they are also not directed to a specific part of the immune system. The more narrow the aim of the treatment, the better. But it's also encouraging to get different approaches as well, since then not only might we eventually hit on something more effective, less side-effect-y, but we also have more choice. It might be that we always have to compromise something (until if and when a 'cure' is found), but at least we can make informed choices from a wider range of options.

it's actually pretty amazing what medical research is capable of doing, and not just with autoimmune disease.

That's exactly it; every treatment compromises something, but it is good to have a lot of options. If one doesn't work, you have another and another....

If a cure is ever found, I wonder if there would be compromises with that as well?

Probably ITP makes us immune to zombie plague, so if you cure it...
Erica