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TOPIC: (17 Sep 2019) My platelet count was 71

Is that the signal of low platelet count 6 years 2 months ago #34933

  • drbean7218
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I met my doctor and got the latest platelet count this morning.

The latest count is 126, it's dropped dramatically in 3 weeks.

However, my doctor said that it was a normal fluctuation and the promacta seems working.
Also, my immune system seems still unstable. He will keep an eye on my case and Tranexamic acid was removed from my treatment.

I'll see my doctor again after 4 weeks.

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Is that the signal of low platelet count 6 years 2 months ago #34946

  • Vdeutsch85
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Yay good news!
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Is that the signal of low platelet count 6 years 2 months ago #34948

  • DeeDee Marie
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I am happy for you! You are doing very good!
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Is that the signal of low platelet count 6 years 2 months ago #34951

  • drbean7218
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DeeDee Marie wrote: I am happy for you! You are doing very good!

I'm not sure it's good or not, since it dropped 140 in 3 weeks.

My doctor said that last high platelet count was due to the effect of IVIG and promacta.
I am afraid the platelet count will drop to 3/4 in a short period of time :(

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Is that the signal of low platelet count 6 years 2 months ago #34953

  • 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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Bean:

Patients who are taking Promacta should only have counts around 50k or so. Having a high count with Promacta or N-Plate is not wise. There is a risk of blood clots. You are doing just fine! Glad you are finally off of Tranexamic acid!
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Is that the signal of low platelet count 6 years 2 months ago #34958

  • drbean7218
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Sandi wrote: Bean:

Patients who are taking Promacta should only have counts around 50k or so. Having a high count with Promacta or N-Plate is not wise. There is a risk of blood clots. You are doing just fine! Glad you are finally off of Tranexamic acid!

Sandi, thanks.
I'll keep update my status to you all. :laugh:

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Is that the signal of low platelet count 6 years 2 months ago #35329

  • drbean7218
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I got flu recently, hopefully that it will be a good news that the treatment become effective.

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Is that the signal of low platelet count 6 years 1 month ago #35686

  • drbean7218
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I have a blood test on last Saturday and I'll met my doctor tomorrow morning to see the progress of my treatment.

I've taken promacta for 2 months, it seems that it can achieve our short term objective which is not rely on IVIG to maintain my platelets count at a safety level.

Also, my doctor said that if my immune system become stable, he will reduce the amount of prednisolone.

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Is that the signal of low platelet count 6 years 1 month ago #35698

  • DeeDee Marie
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Bean,

This sounds like great news for you! This has been your main objective. And, it would be nice to taper down on prednisone and not have to rely on IVIG.

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Is that the signal of low platelet count 6 years 1 month ago #35735

  • drbean7218
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I just met my doctor and the latest platelet count is 329 (as at 17 August 2013)
My doctor step down the treatment as below;

a. 10mg prednisolone per day
b. 200mg Cyclosporin per day
c. 25mg promacta per day

I'll see my doctor after two weeks to monitor the impact of the adjustment

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Is that the signal of low platelet count 6 years 1 month ago #35745

  • DeeDee Marie
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Bean,

With platelets at 329 you are doing very well!! Even if you drop a little, this is still fine.
It would be nice to get your prednisone at a lower level since you are on Promacta. Good luck to you and hope you continue to do well!
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Is that the signal of low platelet count 6 years 1 month ago #35773

  • drbean7218
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DeeDee Marie wrote: Bean,

With platelets at 329 you are doing very well!! Even if you drop a little, this is still fine.
It would be nice to get your prednisone at a lower level since you are on Promacta. Good luck to you and hope you continue to do well!

Thanks for your message.

I hope a successful step down this time, because I was fail last time without Promacta and the treatment was back to the starting point.

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Is that the signal of low platelet count 6 years 1 month ago #36119

  • drbean7218
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I just got the result of blood test, the platelet count is 226 (as at 31 August 2013)
My doctor step down the treatment again

a. 7.5mg prednisolone per day (step down 25%)
b. 200mg Cyclosporin per day
c. 25mg promacta per day

I'll see my doctor three weeks later to see the progress of the treatment.

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Is that the signal of low platelet count 6 years 1 month ago #36143

  • Vdeutsch85
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Woo hoo!

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Is that the signal of low platelet count 6 years 1 month ago #36144

  • Vdeutsch85
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Have you had any side effects from the cyclosporine? I was just weaned off of it. I was on 150 mg and had many gastrointestinal issues. I am now just on Nplate and count was 114 last week. Hoping for a good count tomorrow!

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Is that the signal of low platelet count 6 years 1 month ago #36152

  • DeeDee Marie
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Bean,

This is great news!! I am very happy for you!!

Good luck to both of you (Vdeutsch, too)!
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Is that the signal of low platelet count 6 years 1 month ago #36153

  • drbean7218
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I have side effect from prednisolone and cyclosporin, they are handshaking and acne.

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Is that the signal of low platelet count 6 years 1 month ago #36154

  • drbean7218
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DeeDee Marie wrote: Bean,

This is great news!! I am very happy for you!!

Good luck to both of you (Vdeutsch, too)!

Although the platelets count still fluctuate, it still at normal range.

Each time my doctor said the same reason of dropping platelet count - normal fluctuation

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Is that the signal of low platelet count 6 years 1 month ago #36195

  • Vdeutsch85
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Bean,

I hope your counts will continue to be high! Keep us updated!

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Is that the signal of low platelet count 6 years 3 weeks ago #36530

  • drbean7218
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I got fever yesterday and felt better now. Why did it happen again before the blood test?

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Is that the signal of low platelet count 6 years 3 weeks ago #36534

  • Sandi
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Is that rhetorical or do you want an answer? B)

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Is that the signal of low platelet count 6 years 3 weeks ago #36539

  • drbean7218
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You're right, that's one of the effect of my treatment.

It may be a good news before my blood test. If I got sick before the blood test, the result will be normal - that's my experience.

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Is that the signal of low platelet count 6 years 2 weeks ago #36737

  • drbean7218
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The latest platelet count is 229 (as at 21 September 2013)

My doctor step down the treatment

a. 5mg prednisolone per day (step down 25%)
b. 150mg Cyclosporin per day (step down 25%)
c. 25mg promacta per day

I'll meet my doctor a month later to see the progress of the treatment.

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Is that the signal of low platelet count 6 years 2 weeks ago #36743

  • Sandi
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Good for you, Bean! Sounds good!
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Is that the signal of low platelet count 6 years 2 weeks ago #36746

  • drbean7218
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Sandi wrote: Good for you, Bean! Sounds good!

The result seems good and we hope that everything go right even prednisolone step down to 5 mg altenate day next time.

Last time, the platelets dropped dramatically at that stage :( and the treatment back to starting point.

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Is that the signal of low platelet count 6 years 2 weeks ago #36781

  • DeeDee Marie
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Bean, it has been a while and you are doing very good!! Lets keep our good thoughts up!! It's great that your body is responding!

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Is that the signal of low platelet count 5 years 11 months ago #37363

  • drbean7218
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The latest platelet count is 292 (as at 19 October 2013)

My doctor step down the treatment

a. 5mg prednisolone alternate day
b. 100mg Cyclosporin per day
c. 25mg promacta per day

I'll meet my doctor a month later to see the progress of the treatment.

We don't want the treatment back to starting point again.

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Is that the signal of low platelet count 5 years 11 months ago #37467

  • DeeDee Marie
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Bean,
You are doing very well!! It seems the treatment plan your doctor has you on is working very well!! He's taking it slow and gradually bringing you down.

Good luck to you and wishing you for continued high platelets!
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Is that the signal of low platelet count 5 years 11 months ago #37469

  • Sandi
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Bean - you actually should get those counts down a bit. Counts should be around 50k with Promacta or you risk blood clots. I don't know why doctors are not following this.
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Is that the signal of low platelet count 5 years 11 months ago #37516

  • drbean7218
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Sandi wrote: Bean - you actually should get those counts down a bit. Counts should be around 50k with Promacta or you risk blood clots. I don't know why doctors are not following this.

Our past experience, when the treatment step down to this stage, the no. of platelets dropped dramatically in a week from 190-> single digit.

That's why we still keep promacta even I have high platelet counts.

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