Be a part of the ITP community and stay informed.
Login to your account or REGISTER.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
Forgot your password? Forgot your username? Create an account
Forum
Adults With ITP
General ITP Discussion
(7 Jan 2023) My platelet count was 169

TOPIC:

(2 Aug 2014) Platelet count is 235 9 years 3 months ago #42935

  • drbean7218
  • Offline
  • Posts: 200
  • Thank you received: 9
The latest platelet count as at 2 Aug 2014 - 235, hematin raised to 12g/dl

The latest medical treatment is
a. Cyclosporine A - 100 mg daily
b. Promacta - 25 mg daily

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

Is that the signal of low platelet count 9 years 2 months ago #43845

  • drbean7218
  • Offline
  • Posts: 200
  • Thank you received: 9
The latest platelet count as at 13 Sep 2014 - 183, it dropped more than 50, but my doctor still satisfy with the result, since it still in normal range.

Another news is the hematin back to normal

The treatment remain unchanged
a. Cyclosporine A - 100 mg daily
b. Promacta - 25 mg daily

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

(13 Sep 2014) Platelet count is 183 9 years 2 months ago #43852

  • DeeDee Marie
  • Offline
  • Posts: 869
  • Karma: 1
  • Thank you received: 146
Hi Dr. Bean,

Sorry I didn't reply to your last post but I've been having a lot of trouble with my shoulder after falling on it (and, that was after recovering from surgery).

It seems you are still doing very well which I am very happy for you! And, with your hematin back to normal, this is really good news! Hope you are feeling well, too.

It seem the Cyclosporine A is working very well along with the Promacta.

Take care and keep us posted!

Dee Dee

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

(13 Sep 2014) Platelet count is 183 9 years 2 months ago #43854

  • drbean7218
  • Offline
  • Posts: 200
  • Thank you received: 9

Hi Dr. Bean,

Sorry I didn't reply to your last post but I've been having a lot of trouble with my shoulder after falling on it (and, that was after recovering from surgery).

It seems you are still doing very well which I am very happy for you! And, with your hematin back to normal, this is really good news! Hope you are feeling well, too.

It seem the Cyclosporine A is working very well along with the Promacta.

Take care and keep us posted!

Dee Dee

I am sorry to hear that. Hope you will get well soon.

My platelet count dropped more than 50 this time, that's why I am afraid of a crash in upcoming weeks. :(

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

(13 Sep 2014) Platelet count is 183 9 years 2 months ago #43865

  • DeeDee Marie
  • Offline
  • Posts: 869
  • Karma: 1
  • Thank you received: 146
Dr. Bean,

Try not to stress out too much, and hopefully you won't crash. I know that it is hard to tell sometime. I just seem to crash, too. Mind just happens like within one day. But, so far, I've been holding good.

Take care and we will wish for the best!

Dee Dee

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

(25 Oct 2014) Platelet count is 253 9 years 1 month ago #44746

  • drbean7218
  • Offline
  • Posts: 200
  • Thank you received: 9
The latest platelet count as at 25 Oct 2014 - 253

My doctor reduce the dose of Cyclosporine A slightly;
a. Cyclosporine A - 75 mg daily
b. Promacta - 25 mg daily

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

(25 Oct 2014) My platelet count is 253 9 years 1 month ago #44789

  • DeeDee Marie
  • Offline
  • Posts: 869
  • Karma: 1
  • Thank you received: 146
Dr. Bean,

Your platelets are holding up very well! Glad to see that you are doing good and your doctor has your platelets under control! And, thanks for the update.

Good luck to you,

Dee Dee

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

(29 Nov 2014) My platelet count is 263 8 years 11 months ago #45295

  • drbean7218
  • Offline
  • Posts: 200
  • Thank you received: 9
The latest platelet count as at 29 Nov 2014 - 263

My doctor reduce the dose of Cyclosporine A slightly;
a. Cyclosporine A - 50 mg daily
b. Promacta - 25 mg daily

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

(29 Nov 2014) My platelet count is 263 8 years 11 months ago #45363

  • DeeDee Marie
  • Offline
  • Posts: 869
  • Karma: 1
  • Thank you received: 146
Hi Dr. Bean,

I'm so glad that you are doing good. I've been out of town for a few days and didn't get a chance to respond to your post.

Hope you are feeling good, too. Thanks for giving us the update. It's nice to see what's working for you. You are your doctor are doing something right!

Dee Dee

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

(3 Jan 2015) My platelet count is 130 8 years 10 months ago #45693

  • drbean7218
  • Offline
  • Posts: 200
  • Thank you received: 9
The latest platelet count as at 3 Jan 2015 - 130

It dropped 50% this time, I am afraid of crashing again :(

My doctor unchanged the dose of medicine
a. Cyclosporine A - 50 mg daily
b. Promacta - 25 mg daily

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

(3 Jan 2015) My platelet count is 130 8 years 10 months ago #45741

  • DeeDee Marie
  • Offline
  • Posts: 869
  • Karma: 1
  • Thank you received: 146
Hi Dr. Bean,

Has anything changed since your last blood draw? And, when you do crash, how far do your platelets go down? If they don't go below 10 and your symptom are not too bad, I would try not to worry too much. Something might have recently stressed you out. So far, you have been doing really good. And, at the present, your platelets are still fine.

Please do keep us posted. And, good luck on keeping those platelets up!

Dee Dee

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

(3 Jan 2015) My platelet count is 130 8 years 10 months ago #45745

  • drbean7218
  • Offline
  • Posts: 200
  • Thank you received: 9

Hi Dr. Bean,

Has anything changed since your last blood draw? And, when you do crash, how far do your platelets go down? If they don't go below 10 and your symptom are not too bad, I would try not to worry too much. Something might have recently stressed you out. So far, you have been doing really good. And, at the present, your platelets are still fine.

Please do keep us posted. And, good luck on keeping those platelets up!

Dee Dee

I've got a big flu in the mid of Dec 2014, it took a long time to recover.

If it is going to crash, my platelet count will drop to 3/4 in one or two weeks and I will see some red spots on the skin.

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

(3 Jan 2015) My platelet count is 130 8 years 10 months ago #45749

  • DeeDee Marie
  • Offline
  • Posts: 869
  • Karma: 1
  • Thank you received: 146
Dr. Bean,

You've made it this far without them crashing--so this is a good sign. You mean your platelets go to 3 or 4? There's a good chance that they just dropped from being sick. Make sure you get rest until they are back up.

Good luck to you and hope you are feeling better.

Dee Dee

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

(14 Feb 2015) My platelet count is 234 8 years 9 months ago #46416

  • drbean7218
  • Offline
  • Posts: 200
  • Thank you received: 9
My platelet count as at 14 Feb 2015 - 234

My doctor reduced the dose of cyc-a and we reach the minimum level again

a. Cyclosporine A - 25 mg daily
b. Promacta - 25 mg daily

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

(14 Feb 2015) My platelet count is 234 8 years 9 months ago #46611

  • gstuts
  • Offline
  • Posts: 1
  • Thank you received: 0
Hi, I am new, when I first found out about my low platelet counts I didn't know anything about it. My head,neck and spine Dr kept bugging me about it. They were only in the low 60's so I went to a blood specialist, he said, LOL, you have no tumors, don't take naproxen, live long and prosper. I happen to see a nurse practitioner, she discovered help c. Lucky for me, not. So I go through all of that chemotherapy and get cured, I am left with the baby so to speak, ITP, recently my platelets dropped to 30, now they are back to my normal, 100 to 120. I know little about ITP at my normal level do I need meds?

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

(14 Feb 2015) My platelet count is 234 8 years 9 months ago #46613

  • 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
Most people do not treat unless counts are under 20k or 30k, depending on symptoms. Most only treat when they have to; all of the meds have side effects.

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

(14 Feb 2015) My platelet count is 234 8 years 9 months ago #46635

  • Olvera806
  • Offline
  • Posts: 4
  • Thank you received: 0
Is there anyone here who has been dealing with I.T.P. for more than 23 years? or any success stories of bone marrow transplants? Sorry if I'm dropping in on the wrong thread for this. The tittle seemed nice since I havnt seen that count in a while. Haha

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

(14 Feb 2015) My platelet count is 234 8 years 9 months ago #46644

  • 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
There have been a few people here who have dealt with ITP for many years. What have you tried and how are your counts? I have never seen a bone marrow transplant done for ITP; the risks may be worse than the benefit. It's a very drastic measure.

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

(14 Feb 2015) My platelet count is 234 8 years 9 months ago #46650

  • Olvera806
  • Offline
  • Posts: 4
  • Thank you received: 0
I was first diagnosed when I was 5 months old and I turn 24 in October. I have had a (not in any order) splenectomy, ivig, prednisone, ciclosporin, cellcept, Atg, n-plate, chemo, and currently I am getting rituximab every Friday for 4 weeks (the 27th will be my second dosage). My last count was 7

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

(14 Feb 2015) My platelet count is 234 8 years 9 months ago #46662

  • DeeDee Marie
  • Offline
  • Posts: 869
  • Karma: 1
  • Thank you received: 146
Dr. Bean,

You are still doing great!! It seems your treatment plan works really well for you! I wish you continue success with your platelets.

Dee Dee

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

(14 Feb 2015) My platelet count is 234 8 years 9 months ago #46663

  • DeeDee Marie
  • Offline
  • Posts: 869
  • Karma: 1
  • Thank you received: 146
I wouldn't treat at the 20-30 levels. It seems you are doing fine right now--unless you are getting a lot of bruising or bleeding symptoms. Good luck to you.

Dee Dee

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

(14 Feb 2015) My platelet count is 234 8 years 9 months ago #46664

  • 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
Olvera:

Did N-Plate not work for you?

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

(14 Feb 2015) My platelet count is 234 8 years 9 months ago #46665

  • DeeDee Marie
  • Offline
  • Posts: 869
  • Karma: 1
  • Thank you received: 146
Olvera,
I agree with Sandy. A bone marrow transplant seems like a very drastic measure. Do you have a lot of symptoms? Also, what are your counts at normally?

Dee Dee

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

(14 Feb 2015) My platelet count is 234 8 years 9 months ago #46673

  • Olvera806
  • Offline
  • Posts: 4
  • Thank you received: 0
Sandi:
No unfortunately it did not work for me. My count went up to 80 then they gradually when down to like 10. It has been quite a while since they tried the n-plate so I don't remember too much details.

Dee Dee:
Just the bruising, petechiae, bleeding gums and feeling tired. I'm just tired of the side effects of the pills and other medications (high blood pressure, weight gain, stomach acid problems, head aches, etc.). It's been extremely frustrating. My counts usually sit under 20,000

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

(14 Feb 2015) My platelet count is 234 8 years 9 months ago #46677

  • DeeDee Marie
  • Offline
  • Posts: 869
  • Karma: 1
  • Thank you received: 146
Olvera,
I don't blame you. You've been through a lot of treatments for someone so young. I hate all the meds! If I had it my way, I wouldn't take any. Good luck to you. I have known a few who stopped taking any meds with their platelets around 10-12.

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

(14 Feb 2015) My platelet count is 234 8 years 9 months ago #46682

  • 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
Olvera:

How long did you try N-Plate?

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

(14 Feb 2015) My platelet count is 234 8 years 9 months ago #46692

  • Olvera806
  • Offline
  • Posts: 4
  • Thank you received: 0
The N-plate was before 2010 and from what I remember they would gradually increase the dosage over a course of a month or two.

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

(14 Feb 2015) My platelet count is 234 8 years 9 months ago #46693

  • 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
Maybe it would be worth trying again for a longer time period? It doesn't always work quickly for some people.

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

(14 Feb 2015) My platelet count is 234 8 years 8 months ago #47389

  • drbean7218
  • Offline
  • Posts: 200
  • Thank you received: 9

Dr. Bean,

You are still doing great!! It seems your treatment plan works really well for you! I wish you continue success with your platelets.

Dee Dee

Dee Dee, thanks.

If my platelet count still looking good in upcoming medical check up in the mid of April, my doctor may decide to stop Cyclosporine A, but I will discuss with him about the possibility of reducing the dose of promacta.

It was because we did the same thing last year, but my platelet count crashed after 1.5 months, that's my concern to stop Cyclosporine A.

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

(14 Feb 2015) My platelet count is 234 8 years 8 months ago #47543

  • DeeDee Marie
  • Offline
  • Posts: 869
  • Karma: 1
  • Thank you received: 146
Hi Dr. Bean,

You are doing very well! It might not be a good idea to stop the Cyclosporine A and reduce
the promacta at the same time. Is this what you did before? Maybe try one at a time and see how you respond. Good luck to you! And, hopefully you will not crash this time.

Dee Dee

Please Log in or Create an account to join the conversation.
Forum
Adults With ITP
General ITP Discussion
(7 Jan 2023) My platelet count was 169
Charity Navigator
GuideStar Seal
NORD Member Badge
THSNA logo
THSNA Summit 2024
April 3-6th
https://www.thsna.org/2024