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Platelet Level Rollercoaster 3 months 5 days ago #71784

  • mjocusa
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I wanted to share and get feedback about the treatments my dad is getting for his recurrence of ITP. 10 years ago he was diagnosed, spent 47 days in the hospital, before we finally could get him a proper ITP specialist who came up with a treatment plan, which resulted in a prolonged 10 year remission.

Like many of you, his ITP returned, with a recurrence a couple of months ago. He has done first line IVIG and steroids in multiple courses each time his numbers crashed, along with 6 shots of Nplate, and now a transition to Doptelet daily to try to give better ability to modulate his levels. Unfortunately, he has been in a cycle of spikes and crashes from platelet levels in the hundreds down to single digits, the third crash in two months happening this week. We know it can take time for treatments to take effect and for his immune system to potentially calm down. We imagine he will be in line for immunosuppressants (Azathioprine was used the first time), if his numbers don't stabilize. We are lucky that his specialist at USC hasn't retired yet, and his local hem/onc and the specialist are coordinating treatment.

Any insights beyond just hang in there?

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Platelet Level Rollercoaster 3 months 5 days ago #71785

  • gozorakgogo
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That 47 day stay in the hospital 10 years ago. I am assuming that he remained in hospital for such a long time because his platelet levels were at a critically low level during that time. Do you recall what therapies and treatments he underwent to gain his release and 10 remission?

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Platelet Level Rollercoaster 3 months 4 days ago #71786

  • poseymint
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Hi mjocusa- Sorry to hear your father has to deal with ITP again. IVig and steroids will make most people's counts rise and crash so thats kind of normal. Do you know why your father's numbers are crashing?

I think your father is very responsive to Nplate, thats good. I've been on Nplate for 5 years, its a tricky drug all I know about it is what my hematologist said once- you have to give the dose time to work. Changing doses have caused my counts to crash, even a small change. The doses build upon one another. It seems to take a couple weeks for the dose to reach its full capacity. My hematologist says you find a dose that gets you to 50 and then stay with that dose. Counts may go up and down but we have had to avoid the temptation to adjust the dose. My goal is to have counts between 20 and 100. But if my counts fall to 12, we don't adjust the dose- just ride it out and the next week counts will likely be in range again.

Also, about Nplate- some people on the forum have allowed more time between doses if they are very responsive. One person was getting injections every 10 days. Jay in Chicago was getting Nplate every 3 weeks. Some people go into remission on Nplate after a while and some people never find stability, their counts swing all over on Nplate.
Azathioprine might cause your father to be more vulnerable to infections so that might be a concern with Covid around. And if he is getting a booster vaccine you'd have to space it away from Aza. There have been a few people on the forum that have taken Doptelet (avatrombopag) and they seem to like it. Hope it works for your father. Good advice for any of these drugs is give them time to work.
Great that your father kept his spleen 10 years ago! (I assume he still has it).  With the threat of Covid, I'm glad I still have mine.

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Platelet Level Rollercoaster 3 months 4 days ago #71787

  • poseymint
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More questions: Could you tell us more about how your father went into remission 10 years ago? What doses and drugs was he on and for how long? There have been other ITPers that were patients of Dr Leibman on the forum. I believe he combined drugs with them also- Promacta and Cell Cept is what I remember but could be wrong. Great he is still practicing, we need good ITP doctors. Is your father having the nose and mouth bleeding that he was having the first time when his counts crash? - thanks!

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Platelet Level Rollercoaster 3 months 2 days ago #71788

  • mjocusa
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Thanks for the replies.

10 years ago he had IVIG plus Prednisone, almost daily platelet transfusions, then Rituximab and Dexamethasone, talk of splenectomy (by his overmatched Kaiser oncologists) but we fought back against that, and finally 2 months of Nplate followed by 3-4 months Azathioprine. The 47 day hospital stay was because he had low counts with some bleeding, and they kept pumping him full of platelets, but in retrospect the long hospitalization was overkill and could have been done as outpatient treatment in my opinion. It was not like the TPO agents were unknown back then, but to Kaiser they might as well have been practicing in the 1970s.

We don't know why his numbers keep crashing, they are proving to be quite volatile, and his response so far to Doptelet has been weak, but he is only about 2 weeks into treatment with that. That is good feedback about Nplate Poseymint, we are wondering if he will return to Nplate treatments if the Doptelet proves ineffective.

In terms of the remission, we are left wondering the same thing- what was the trigger. He had Rituximab, it could have been that, but we have been told that the durable response rate in men is often quite poor. It could have been the Azathioprine, or some combination of the treatments, or the biggest question mark of all, could it have just been time and his immune system recovered and reset?

To complicate matters there is a correlation between a flu shot 10 years ago and the first round of ITP, and the Pfizer vaccine this time around. These are just correlated, no one can say for sure they were causal. His Covid shots were in February and March and recurrence in July, so that was not an immediate cause and effect, although we suspect lower counts for a month or two before they bottomed out in July and we realized the ITP had returned. It makes us cautious however about lining up for a third shot.

Dr. Liebman is great, we are quite lucky to have him as a resource. CellCept has been mentioned as an option, but we aren't there yet.

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Platelet Level Rollercoaster 2 months 3 weeks ago #71799

  • mjocusa
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Just an update to this ongoing saga. My dads platelet numbers crashed and would not budge with Doptelet or Nplate. His local doc was having a hard time figuring out what to do next.

The treatment plan was a novel combination of vincristine and sirolimus, which have progressively raised his levels following a hospitalization to receive the treatments. Many thanks for ITP specialists and for the PDSA as a resource to find them.

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Platelet Level Rollercoaster 2 months 3 weeks ago #71800

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Wow  
That's an aggressive combination  of immuno-suppressants during a world wide pandemic.

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Platelet Level Rollercoaster 2 months 3 weeks ago #71801

  • mjocusa
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Indeed it is, and it wasn't done lightly. The hope is he will retain some immunity from his vaccine shots given earlier this year.
His immune system was destroying platelets despite all the TPOs being thrown at it. The two drugs raised the platelet numbers from single digits to over 50 and climbing.

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