Right time to infuse PTL

What is right time to infuse PTL is it visible symptoms of bleeding or low PTL count. As I have count of 9K with no bleeding

Platelet transfusions for ITP should only be given to stop a life threatening bleed (not just a nosebleed or bleeding gums, and certainly not just low counts).
If you have ITP, a platelet infusion will only increase your counts very temporarily, because your immune system will attack the infused platelets very aggressively.

Rob, got a side question. If someone has only a TPO antibody or only a TPO receptor antibody issue, wouldn't a transfusion be sustained? Just off hand, I can only recall reading of one person on here where they thought their transfusions would sustain. Do you suppose it is more common and is just under reported here?

Hal,

I wondered about that as I wrote my post. What you are saying makes intuitive sense. but I have seen nothing like it in the literature. Everything I have read says that the effect of platelet infusion WILL be short-lived, not just some of the time.

The following is pure conjecture:
For people with TPO antibodies, a feedback effect from transfused platelets, combined with the antibodies, might cause a severe rebound and reduced platelets. TPO, is produced in the liver, and is inhibited by the circulation of platelets. Platelet transfusions would likely cause a drop in TPO levels, while TPO antibodies continue to be produced. Following a transfusion, TPO antibodies might overwhelm the remaining TPO, and TPO levels might effectively drop to nothing, causing platelet production to come to a halt. Then as the heterologous platelets would die off naturally, with few new platelets in the pipeline, the lapse in production might cause platelets to drop even lower than they were to begin with.

As a side note, I think that this kind of feedback is similar to what can make Promacta and Nplate levels oscillate. making it difficult to achieve a stable dose.

I agree that we should not have platelet transfusions unless it is necessary to stop active bleeding. I've always refused platelet transfusions, but boy it can really upset some medical professionals! Several nurses and my PCP doctor have the impression that platelets under 10-20K is a medical emergency. My lowest count was 1K, I took some prednisone right away- I carry it with me. But my hematologist knows that I'm okay at low numbers and was unconcerned except to raise my NPlate dose.

I don't understand everything about the feedback system that you are talking about, Rob, but Its very interesting! Makes sense- thanks for sharing your ideas. They say in the Nplate literature that when you stop Nplate that counts can go lower than they were before starting the drug. When I was first diagnosed with ITP my counts were around 10-12K for two years without treatment. They dropped to 6K, I started prednisone which bumped them up to 96K. After that I could never not treat again because numbers would be zero without treatment. Another story I heard in the doc's office--
A patient had counts that I believe were above 10K without treatment. She got a splenectomy. Counts shot up to 400K for a few days or week, then crashed to zero. And she couldn't get her counts back up to 10K again without treatment.
I don't know the chemistry behind it but I've thought the immune system (army) was comfortable with the platelet (invaders) at a certain number like 10K. But when the army detects that the invader forces have suddenly risen to 400K ! the army has to ramp up its forces to completely clean house on the platelets. And as we know, the immune system has a long long memory.

Yeah, what you say is true. During my last visit to my Hematologist the count was 9K. Presently I am on 80mg Predinisolone and 100mg Azathioprine BD. Along with Tranexamic acid to prevent bleeding. But one of my friend asked to get Antiphospholipid test done, what is it's relevance can you help me out please.

About 1/3 of the patients with ITP also have Antiphospholipid Syndrome. It's a clotting disorder, and I know it seems odd to have a clotting disorder and bleeding disorder at the same time, but it happens. If a person with ITP also has APS, they'd want to be extra careful about treatment choices that can cause clotting, or treatments that can cause counts to go up quickly.

Hi Everyone,

Need some information, I was diagnosed for Immune Thrombocytopenia on 4th of this month, initially three MPS(1gm) injections were given and then their was instant rise in platelets. they put me on oral prednisolone from 8th January, the count on 10th was 159K. The oral dose was 90mg tapering 5mg after each 5days.
But when I checked for platelets on 12th it was 60K as steep fall. When I checked it after 4days the count was 38K. My Doctor added Calcium and asked to visit every week.
As their was continuous fall I took second opinion on 17th January exactly 8days after oral perdnisolone was started and the other Doctor added Azathioprine 50mg BD. Wanted to know how much time does it take prednisolone to start its action should we wait for it or should proceed with other alternatives.
Again their was fall in the count on 23rd, the count was 9K ans some rashes on thighs. He added Tranexamic acid to prevent bleeding from Bruises.
Finally when I met him yesterday the count was 9K he again added Danazol 200mg and Revolade 25mg.
What's the outcome I am totally confused, as it is difficult to pointout which drug will work.
Presently I am on 80mg Prednisolone OD,
50mg Azathioprine BD
1500mg Tranexamic Acid TD
25mg Revolade(Electrobopage Olamine)
200mg Danazol BD.
Finally for past two weeks when their was no fall in platelet below 9K was their necessity of adding Danazol and Revolade.

Please Guide
Thanks

Sounds like using a sledge hammer to crack a nut. Far too many concurrent treatments for one so newly diagnosed in my opinion.
The link below may be useful. Don't be deterred by the title. It is for nurses who know nothing about ITP, i.e. me when I was first diagnosed.
www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

Thanks mrsb,

Very useful in terms of time, it seems I should wait or change.

Thanks

I agree, that's an awful lot of meds and you won't know which is working. It seems like overkill which can cause unnecessary side effects and toxicity.