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Seeking info: Trouble maintaining platelet counts

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11 years 10 months ago - 11 years 10 months ago #40611 by Judy14
I was diagnosed with ITP last June with counts in the mid 20,000s. I'm a 67 year old female and otherwise healthy.
Bone marrow biopsy showed normal production of platelets etc. Since June, have been on prednisone (currently tapered to 10mg/day), IVIG and a 4-day regimen of dexamethazone (sp?)when counts plummeted to 5,000 last Sept. gave temporary jump to count as hematologist predicted. When numbers dropped back down to 20s, I Had 4 Rituxan infusions, which bumped me up to 110,000, but it's now been only a few months since the last and I'm back down to 34,000. Today, my hematologist started me on 4-days of dexamathazone to be repeated every 28 days while continuing with the 10mg prednisone. If that doesn't bump it up in 3 weeks when I see him again, he wants to do another IVIG. He knows I'm against splenectomy.
I'm starting to feel like nothing is going to work, but am looking for any experiences/input/suggestions from those of you who've been where I am. Thanks so much!

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  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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11 years 10 months ago #40624 by karenr
I see you've answered here the questions I had on the other thread.

Do you have symptoms at 34K? If you don't have symptoms and can maintain at that level, maybe you should be satisfied with that count? (You may have to talk your hematologist into that though.What does HE think is a safe count?)
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11 years 10 months ago #40626 by Judy14
Just saw your other response. My only symptoms (bruising) have been when I'm under 24k, but as I said in other thread, he feels under 30 warrants treatment - I'm guessing to avoid future symptoms.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 10 months ago #40627 by Sandi
Judy:

Here's the thing. Sometimes with ITP, you have to learn to settle for less than normal. For most people any count over 20k is considered to be safe. For someone a bit older, you might want to keep them over 30k or 40k. The point is, counts do not have to be normal.

The treatments are working for you, they are just not keeping your counts stable. I think that is what you want, even if they are not normal-stable. You might want to discuss N-Plate or Promacta with your doctor because either of those will more than likely give you a safe, stable count instead of the fast, high rises and low falls that you have going on now.

There's my opinion.

You also might want to read this:

pdsa.org/forum-sp-534/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html
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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 10 months ago #40628 by Sandi
One more thing - those steroids, especially Dex, have horrible side effects. Most people do much better with The two TPO's that I mentioned.

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11 years 10 months ago #40629 by Judy14
thanks, Sandi...I'll do some research on those before seeing the hematologist next!

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