3rd crash in 2 months

He's on N-Plate. Counts above 50k when on that drug carry a risk of blood clots.

Thanks, Sandi. This is all new to me. Thanks for the clarification!

Hi guys
Sorry for the long delay in response

My sons off prednisone

Doc has asked to continue with revolade and mycophenolate.

Have been asked to visit after 4 weeks

God bless

Hey! I've been thinking about you! How are his counts?

God has been kind

His counts are now 220

Doc has suggested that the revolade Tapering to be done after 4weeks

Alternate days 50mg and 25mg respectively

Love and regards

Sounds like a good plan since his counts are high enough! It sure makes a difference when the meds are dosed right! I'm glad to hear it.

Nice to hear from you Badami.

Gosh, with a count of 220 and 50mg Revolade, one would think mycophenolate is contributing perhaps half.

I honestly Have no idea what's working(revolade /mycophenolate)
Just going by this doc's advice

How's you?

Hopefully, they get him off of the Mycophenolate soon. He might not even need it.

Oops, should have said 'three quarters' instead of 'half'.
Revolade recommends patients start at 50mg apparently because that dose will give an average patient a count of 50 - which is the target. As the doc tapers him off Revolade, the real fractional amount will be known. My guess at this point is a count of about 100-150 with no Revolade - which would be a very safe number from a symptom stand point.

As Sandi points out, and from what I've read, he is at an increased risk of unwanted/damaging blood clots with that high of count while being on Revolade.

Me? Counts seem to be slowly falling as the IVIG in November seems to be wearing off. Not sure what is going to be tried next. Maybe more IVIG.

That's a pretty good response from IVIG, Hal! If you get a few months from it, it might be worth repeating. Very few get a sustained response like that.

Sandi, I have to wonder if the extended IVIG response has something to do with immune system dendritic cells. Since they are all over the body I wonder if it would take a long time to turn them over (from Rituxan) or modify them (from IVIG).
Of the different options going forward, the safest path seems to be another IVIG then follow up with NPlate. As the counts fall through 50 from IVIG, start NPlate. With NPlate, see if feeding my immune system enough young platelets can put the Treg <-> Thelper cells into balance.

Did you see the weird counts during my appendicitis hospital stay? From one large platelet transfusion: a rise in counts, a fall in counts, another even higher rise in counts, then fall to baseline.
pdsa.org/discussion-group/7-treatment-general/29574-rituximab-has-been-approved-do-i-take-it-or-wait-for-nplate.html#58243
I wonder if the transfusion fed my immune system enough 'good' platelets to put the Treg / Thelper cells into balance long enough for a brief remission. If that is what happened then NPlate or Promacta could work on the same principal for remissions. Am I making any sense, or far fetched?

I can honestly say that ITP'ers do not get a sustained response from platelet transfusions. They usually don't even last a few hours. That's why they are actually contraindicated with ITP; because they don't last long enough to be worth the risks, and there are risks.

You can't predict what is going to happen as far as treatments and counts. Everyone makes that attempt and just when you think you've got it down, you get thrown a big surprise.

LOL, that is an interesting way to say 'far fetched'.

It was far more polite!