NPlate Information

Hello All,

I was reading through past posts and just wanted to put this out there. I have personally seen Dr. Kuter in Boston a few times. He was part of the team that developed Nplate and has over 5,000 ITP patients. He told me that there are 3 types of ITP patients:

Those who have a platelet destruction only problem. (The platelets are only being destroyed due to some immune factor, most likely autoantibodies.)

Those who have a platelet production only problem. (Their body does not produce enough platelets.)

Those who have a combination of a platelet destruction and production problem. (Their body destroys their platelets and at the same time can't make the platelets fast enough to keep up with the destruction, which is why they seem to always have a low platelet count despite treatment.)

Your body makes a hormone called thrombopoietin (TPO). It is made by your liver and kidneys and stimulates your body to make platelets. Dr. Kuter told me that if you do not have a platelet production problem, NPlate will not help you as the whole purpose of the drug is to stimulate platelet production by mimicking the effects of the hormone thrombopoietin (TPO). 

Before you start Nplate, your hematologist should test your thrombopoietin level. If it is within normal range, this means that your body is producing platelets at a normal rate. Dr. Kuter told me that in this case, NPlate most likely will not help you. In my experience, most hematologists don't necessarily have this knowledge and you may have to ask for this test to be run. 

Perhaps this will help someone from unnecessarily taking Nplate if their ITP is destruction only based. It can come with some nasty side effects.
 

That's great to learn, that there is a test to determine  thrombopoietin levels, AND, that if your levels are up you don't need or want a drug that is a  thrombopoietin receptor agonist! My hematologist started that talk, of second line choices,  before I figured out the papaya leaf extract, and he never mentioned a thombopoietin test.

Also great to have the 3 types of ITP explained. Thank you.

 Being able to differentiate between the different types of ITP can really help many people avoid unnecessary treatment. It is worth everyone's attention and further discussion with their doctor. 

From  slope game ,

I have the test ready for if and when I get low platelets again. Now, if you google with AI if papaya leaf extract is a tpo agonist, you get yes, and many other details. So, if you look at papaya leaf extract as a tpo agonist, and since it works for me, it would suggest that my TPO test will suggest a shortage of TPO, away from using the supplemental PLE, of course. But, I guess its still worth doing the test...

Be aware, there are two TPO tests. One for thyroid peroxidase,  which is not the one you want.  You want the thrombopoieitin test.

Before I take this test, I'll just throw it out there that my doctors seem to think that itp is all about destruction. So, I think they expect the test to show plenty of thrombopoietin, but they think you can still throw tpo agonists at it to balance things out. They are not happy enough with the test to really spell things out for me very well. When you try to make decisions for yourself, this is what you get. I guess you have to expect this when you go against the grain.

Now, if you google "If you have a platelet production problem, is it still ITP?", this is  what you get from AI; 

No, a platelet production problem is not the same as Immune Thrombocytopenia (ITP).  ITP is an autoimmune disease where the body's immune system attacks and destroys platelets, leading to a low platelet count.  While platelet production can be affected in some cases of ITP, it's primarily a problem of platelet destruction.  Other conditions, like aplastic anemia or blood cancers, can cause low platelet counts due to problems with platelet production, but these are not ITP. 

So, this agrees with my doctor saying that he doesn't think my affliction is related to the thrombopoietin test.

Its all somewhat confusing, but the lab does have similar wording to the original idea here, saying that it is a waste of money if you take tpo agonist drugs when you have seriously elevated thrombopoietin. So yes, there is a reason for the test.

Turns out this thrombopoietin test is like no other. I may have to wait over a month for the result.

So, I got the test back in a week, so that wasn't too bad. 76 Thrombopoietin for a normal range of 7  to 99, so I believe that this does not rule out TPO agonist drugs, since it is not seriously elevated. Good to know, in case...