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(23 Mar 2024) My platelet count was 174
- drbean7218
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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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- Vdeutsch85
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- drbean7218
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I'm not sure it's good or not, since it dropped 140 in 3 weeks.DeeDee Marie wrote: I am happy for you! You are doing very good!
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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- 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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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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- drbean7218
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Sandi, thanks.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!
I'll keep update my status to you all. :laugh:
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- drbean7218
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- drbean7218
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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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- DeeDee Marie
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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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- drbean7218
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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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- DeeDee Marie
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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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- drbean7218
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Thanks for your message.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!
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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- drbean7218
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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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- Vdeutsch85
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- DeeDee Marie
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This is great news!! I am very happy for you!!
Good luck to both of you (Vdeutsch, too)!
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- drbean7218
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- drbean7218
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Although the platelets count still fluctuate, it still at normal range.DeeDee Marie wrote: Bean,
This is great news!! I am very happy for you!!
Good luck to both of you (Vdeutsch, too)!
Each time my doctor said the same reason of dropping platelet count - normal fluctuation
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- Vdeutsch85
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I hope your counts will continue to be high! Keep us updated!
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- Sandi
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- drbean7218
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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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- drbean7218
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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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- Sandi
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- drbean7218
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The result seems good and we hope that everything go right even prednisolone step down to 5 mg altenate day next time.Sandi wrote: Good for you, Bean! Sounds good!
Last time, the platelets dropped dramatically at that stage and the treatment back to starting point.
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- drbean7218
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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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- DeeDee Marie
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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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- Sandi
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- drbean7218
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Our past experience, when the treatment step down to this stage, the no. of platelets dropped dramatically in a week from 190-> single digit.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.
That's why we still keep promacta even I have high platelet counts.
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