(7 Jan 2023) My platelet count was 169

Is that the signal of low platelet count 10 years 2 months ago #34933

drbean7218 Offline Posts: 200 Thank you received: 9	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 10 years 2 months ago #34946

Vdeutsch85 Offline Posts: 723 Thank you received: 121	Yay good news! The following user(s) said Thank You: drbean7218
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Is that the signal of low platelet count 10 years 2 months ago #34948

DeeDee Marie Offline Posts: 869 Karma: 1 Thank you received: 146	I am happy for you! You are doing very good! The following user(s) said Thank You: drbean7218
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Is that the signal of low platelet count 10 years 2 months ago #34951

drbean7218 Offline Posts: 200 Thank you received: 9	DeeDee 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 10 years 2 months ago #34953

Sandi Offline Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18 Posts: 12436 Karma: 11 Thank you received: 2375	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! The following user(s) said Thank You: drbean7218
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Is that the signal of low platelet count 10 years 2 months ago #34958

drbean7218 Offline Posts: 200 Thank you received: 9	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.
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Is that the signal of low platelet count 10 years 1 month ago #35329

drbean7218 Offline Posts: 200 Thank you received: 9	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 10 years 1 month ago #35686

drbean7218 Offline Posts: 200 Thank you received: 9	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 10 years 1 month ago #35698

DeeDee Marie Offline Posts: 869 Karma: 1 Thank you received: 146	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 10 years 1 month ago #35735

drbean7218 Offline Posts: 200 Thank you received: 9	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 10 years 1 month ago #35745

DeeDee Marie Offline Posts: 869 Karma: 1 Thank you received: 146	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! The following user(s) said Thank You: drbean7218
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Is that the signal of low platelet count 10 years 1 month ago #35773

drbean7218
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Posts: 200
Thank you received: 9

DeeDee 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 10 years 1 month ago #36119

drbean7218 Offline Posts: 200 Thank you received: 9	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 10 years 1 month ago #36143

Vdeutsch85 Offline Posts: 723 Thank you received: 121	Woo hoo!
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Is that the signal of low platelet count 10 years 1 month ago #36144

Vdeutsch85 Offline Posts: 723 Thank you received: 121	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 10 years 1 month ago #36152

DeeDee Marie Offline Posts: 869 Karma: 1 Thank you received: 146	Bean, This is great news!! I am very happy for you!! Good luck to both of you (Vdeutsch, too)! The following user(s) said Thank You: Vdeutsch85, drbean7218
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Is that the signal of low platelet count 10 years 1 month ago #36153

drbean7218 Offline Posts: 200 Thank you received: 9	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 10 years 1 month ago #36154

drbean7218 Offline Posts: 200 Thank you received: 9	DeeDee 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 10 years 4 weeks ago #36195

Vdeutsch85 Offline Posts: 723 Thank you received: 121	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 10 years 2 weeks ago #36530

drbean7218 Offline Posts: 200 Thank you received: 9	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 10 years 2 weeks ago #36534

Sandi Offline Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18 Posts: 12436 Karma: 11 Thank you received: 2375	Is that rhetorical or do you want an answer?
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Is that the signal of low platelet count 10 years 2 weeks ago #36539

drbean7218 Offline Posts: 200 Thank you received: 9	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 10 years 1 week ago #36737

drbean7218 Offline Posts: 200 Thank you received: 9	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 10 years 1 week ago #36743

Sandi Offline Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18 Posts: 12436 Karma: 11 Thank you received: 2375	Good for you, Bean! Sounds good! The following user(s) said Thank You: drbean7218
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Is that the signal of low platelet count 10 years 1 week ago #36746

drbean7218 Offline Posts: 200 Thank you received: 9	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 10 years 1 week ago #36781

DeeDee Marie Offline Posts: 869 Karma: 1 Thank you received: 146	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 9 years 11 months ago #37363

drbean7218 Offline Posts: 200 Thank you received: 9	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 9 years 11 months ago #37467

DeeDee Marie Offline Posts: 869 Karma: 1 Thank you received: 146	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! The following user(s) said Thank You: drbean7218
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Is that the signal of low platelet count 9 years 11 months ago #37469

Sandi Offline Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18 Posts: 12436 Karma: 11 Thank you received: 2375	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. The following user(s) said Thank You: drbean7218
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Is that the signal of low platelet count 9 years 11 months ago #37516

drbean7218 Offline Posts: 200 Thank you received: 9	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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