!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

(17 May 2024) My platelet count was 171

drbean7218
Topic Author
Offline

11 years 8 months ago #34933 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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.

Please Log in or Create an account to join the conversation.

Vdeutsch85
Offline

11 years 8 months ago #34946 by Vdeutsch85

Replied by Vdeutsch85 on topic Is that the signal of low platelet count

Yay good news!

The following user(s) said Thank You: drbean7218

Please Log in or Create an account to join the conversation.

DeeDee Marie
Offline

11 years 8 months ago #34948 by DeeDee Marie

Replied by DeeDee Marie on topic Is that the signal of low platelet count

I am happy for you! You are doing very good!

The following user(s) said Thank You: drbean7218

Please Log in or Create an account to join the conversation.

drbean7218
Topic Author
Offline

11 years 8 months ago #34951 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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

Please Log in or Create an account to join the conversation.

Sandi
Offline
Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

11 years 8 months ago #34953 by Sandi

Replied by Sandi on topic Is that the signal of low platelet count

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

Please Log in or Create an account to join the conversation.

drbean7218
Topic Author
Offline

11 years 8 months ago #34958 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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:

Please Log in or Create an account to join the conversation.

drbean7218
Topic Author
Offline

11 years 7 months ago - 11 years 7 months ago #35329 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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

Please Log in or Create an account to join the conversation.

drbean7218
Topic Author
Offline

11 years 7 months ago #35686 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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.

Please Log in or Create an account to join the conversation.

DeeDee Marie
Offline

11 years 7 months ago #35698 by DeeDee Marie

Replied by DeeDee Marie on topic Is that the signal of low platelet count

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.

Please Log in or Create an account to join the conversation.

drbean7218
Topic Author
Offline

11 years 7 months ago - 11 years 7 months ago #35735 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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

Please Log in or Create an account to join the conversation.

DeeDee Marie
Offline

11 years 7 months ago #35745 by DeeDee Marie

Replied by DeeDee Marie on topic Is that the signal of low platelet count

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

Please Log in or Create an account to join the conversation.

drbean7218
Topic Author
Offline

11 years 7 months ago #35773 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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.

Please Log in or Create an account to join the conversation.

drbean7218
Topic Author
Offline

11 years 6 months ago - 11 years 6 months ago #36119 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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.

Please Log in or Create an account to join the conversation.

Vdeutsch85
Offline

11 years 6 months ago #36143 by Vdeutsch85

Replied by Vdeutsch85 on topic Is that the signal of low platelet count

Woo hoo!

Please Log in or Create an account to join the conversation.

Vdeutsch85
Offline

11 years 6 months ago #36144 by Vdeutsch85

Replied by Vdeutsch85 on topic Is that the signal of low platelet count

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!

Please Log in or Create an account to join the conversation.

DeeDee Marie
Offline

11 years 6 months ago #36152 by DeeDee Marie

Replied by DeeDee Marie on topic Is that the signal of low platelet count

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

Please Log in or Create an account to join the conversation.

drbean7218
Topic Author
Offline

11 years 6 months ago #36153 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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

Please Log in or Create an account to join the conversation.

drbean7218
Topic Author
Offline

11 years 6 months ago #36154 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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

Please Log in or Create an account to join the conversation.

Vdeutsch85
Offline

11 years 6 months ago #36195 by Vdeutsch85

Replied by Vdeutsch85 on topic Is that the signal of low platelet count

Bean,

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

Please Log in or Create an account to join the conversation.

drbean7218
Topic Author
Offline

11 years 6 months ago - 11 years 6 months ago #36530 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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

Please Log in or Create an account to join the conversation.

Sandi
Offline
Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

11 years 6 months ago #36534 by Sandi

Replied by Sandi on topic Is that the signal of low platelet count

Is that rhetorical or do you want an answer?

Please Log in or Create an account to join the conversation.

drbean7218
Topic Author
Offline

11 years 6 months ago #36539 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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.

Please Log in or Create an account to join the conversation.

drbean7218
Topic Author
Offline

11 years 6 months ago #36737 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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.

Please Log in or Create an account to join the conversation.

Sandi
Offline
Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

11 years 6 months ago #36743 by Sandi

Replied by Sandi on topic Is that the signal of low platelet count

Good for you, Bean! Sounds good!

The following user(s) said Thank You: drbean7218

Please Log in or Create an account to join the conversation.

drbean7218
Topic Author
Offline

11 years 6 months ago #36746 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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.

Please Log in or Create an account to join the conversation.

DeeDee Marie
Offline

11 years 5 months ago #36781 by DeeDee Marie

Replied by DeeDee Marie on topic Is that the signal of low platelet count

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!

Please Log in or Create an account to join the conversation.

drbean7218
Topic Author
Offline

11 years 5 months ago - 11 years 5 months ago #37363 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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.

Please Log in or Create an account to join the conversation.

DeeDee Marie
Offline

11 years 5 months ago #37467 by DeeDee Marie

Replied by DeeDee Marie on topic Is that the signal of low platelet count

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

Please Log in or Create an account to join the conversation.

Sandi
Offline
Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

11 years 5 months ago #37469 by Sandi

Replied by Sandi on topic Is that the signal of low platelet count

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

Please Log in or Create an account to join the conversation.

drbean7218
Topic Author
Offline

11 years 5 months ago #37516 by drbean7218

Replied by drbean7218 on topic Is that the signal of low platelet count

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.

Please Log in or Create an account to join the conversation.

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.

Platelet Disorder Support Association
8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141
Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003
E-mail: pdsa@pdsa.org

© Copyright 1997 - 2025, Platelet Disorder Support Association. All rights reserved.
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

Become a Member

Make a Donation

!!! DISCUSSION GROUP RULES !!!

(17 May 2024) My platelet count was 171

Donate

About

Stay Informed

Follow Us

IMPORTANT!