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TOPIC: (2 Nov 2019) My platelet count was 100

Is that the signal of low platelet count 6 years 6 months ago #33480

  • 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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I'd watch taking the Tranexamic acid with a higher platelet count. You don't want to end up with a blood clot.

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Is that the signal of low platelet count 6 years 5 months ago #33530

  • drbean7218
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It's fine, this combination push my platelets in the Jan 2013

On the other hand, I'll have a follow up consultation on 18 Jun.
If everything goes right, Tranexamic acid will be removed on 18 Jun

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Is that the signal of low platelet count 6 years 5 months ago #33541

  • 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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Tranexamic acid does nothing for the platelet count. It's only used to prevent bleeding.
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Is that the signal of low platelet count 6 years 5 months ago #33563

  • Lady Elly
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After having several IVIG's, the nurse gave me a paper on IVIG's. I need to drink 8 glasses of water per day, 30 days prior to IVIG and 30 days afterward. This is to prevent kidney failure according to the print out I received.

I started drinking 8 glasses per day in 2010 (after having IVIG's) and have continued the 8 glasses per day. My platelets are always low, 15k last week. The IVIG's would bring platelets up, but dropped rapidly. I was doing IVIG's every 4 - 6 weeks for 1.5 years.

At present, I am not on any meds. I don't have any problems with bleeding.

Good luck and hope you platelets will go up and hold.
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Is that the signal of low platelet count 6 years 5 months ago #33575

  • Vdeutsch85
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Let us know you are don!

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Is that the signal of low platelet count 6 years 5 months ago #33619

  • drbean7218
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Lady Elly wrote: After having several IVIG's, the nurse gave me a paper on IVIG's. I need to drink 8 glasses of water per day, 30 days prior to IVIG and 30 days afterward. This is to prevent kidney failure according to the print out I received.

I started drinking 8 glasses per day in 2010 (after having IVIG's) and have continued the 8 glasses per day. My platelets are always low, 15k last week. The IVIG's would bring platelets up, but dropped rapidly. I was doing IVIG's every 4 - 6 weeks for 1.5 years.

At present, I am not on any meds. I don't have any problems with bleeding.

Good luck and hope you platelets will go up and hold.

thanks for your information

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Is that the signal of low platelet count 6 years 5 months ago #33660

  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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/Vdeutsch85,

I was reading through here and saw your dr wouldn't give you nplate at 150, I just wanted to say that is actually a good dr. I wanted to tell you my story real quick so you know the consequences of a normal platelet count. I do not have a clotting problem along with itp, I have been tested numerous times. In 2010 I was 25 I had a stroke due to nplate and due to my dr allowing me to have a normal or above normal count, when I first got to the hospital in the Bahamas(I was on a cruise) my count was only 197 and continued to climb all the way to 699, I just wanted to share ,trust your doctor a little bit because I wouldn't want that happening to anyone else I spend several months in physical therapy lost my job and my apartment. And my left arm is always numb and makes it difficult to do certain things. I am only telling you guys this because if you are on nplate it can be avoided I found another doc who won't let me above 100

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Is that the signal of low platelet count 6 years 5 months ago #33665

  • Vdeutsch85
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Kelli,

I am sorry to hear your story. For me it's such a balancing act. Up until April, my regular hematologist thought Nplate did not work at all because I had never been above 22. After going to specialist he upped the dose to maximum doseage and I began responding. i think he is still trying to figure out dosage. I think we both figured out I need it weekly. I crashed three times after not having it during the 2nd week. My counts will be around 150 and by the next week I'm at 4 without it. I know I crash around the 10th day based on symptoms. In a perfect world, i would be getting it every 10 days exactly but thats not possible. He was really afraid to give me it on 2nd week and afraid now not to give it to me and consulted with specialist when I was at 241 two weeks ago. Its a double edged sword. They agreed to give me a smaller dose. Last week I was at 85 and was given same dose. I don't know but maybe I'm on the right doseage path?


Valerie

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Is that the signal of low platelet count 6 years 5 months ago #33730

  • drbean7218
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I've visited another hematologist this morning, she suggested two ways;

a. going for the splenectomy
b. trying an really expensive medicine to boost the growth of platelets

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Is that the signal of low platelet count 6 years 5 months ago #33768

  • drbean7218
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Can I still have a chance to reach remission with this combination of the treatment

a. 15mg prednisolone per day
b. 250mg Cyclosporin per day
c. 750mg Tranexamic acid per day

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Is that the signal of low platelet count 6 years 5 months ago #33773

  • 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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Yes, possibly. Tranexamic acid will not do anything to help remission though. Seriously, are you still taking that with higher counts? That would concern me.

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Is that the signal of low platelet count 6 years 5 months ago #33783

  • Vdeutsch85
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Was the doctor talking about a TPO like Nplate or Promacta?

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Is that the signal of low platelet count 6 years 5 months ago #33786

  • drbean7218
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Sandi wrote: Yes, possibly. Tranexamic acid will not do anything to help remission though. Seriously, are you still taking that with higher counts? That would concern me.

Thanks.

I am still taking Tranexamic acid, since I'll have a blood test today and see my doctor next Tuesday.
At this moment, I don't know the latest platelets count.

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Is that the signal of low platelet count 6 years 5 months ago #33787

  • drbean7218
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No, but my doctor didn't strongly suggest me taking surgery, he suggest me think about it in a long term.

Also, it seems that taking surgery is relatively cheaper than taking other medicine to boost the platelets.

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Is that the signal of low platelet count 6 years 5 months ago #33801

  • Vdeutsch85
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Drbean,

Unfortunately TPO's are very expensive. However, they have worked for many of us on here including myself. Make sure you do research and become your own advocate.

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Is that the signal of low platelet count 6 years 5 months ago #33830

  • drbean7218
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At this moment, the side-effect of the treatment is acne, it's really hurt in my face.

My doctor said that my platelets drop in a week wasn't related to meal, but I believe that it may be related. It is because it didn't make sense that platelets drop dramatically less than a week after the treatment of ivig.

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Is that the signal of low platelet count 6 years 5 months ago #33831

  • Sandi
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Fast dropping platelets is typical after IVIG. It can get counts up fast but they don't stay up for long.

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Is that the signal of low platelet count 6 years 5 months ago #33886

  • drbean7218
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I am back to hospital again, the latest platelets count is 16

I am going to inject ivig again, who can tell me what's wrong with me

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Is that the signal of low platelet count 6 years 5 months ago #33924

  • Vdeutsch85
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Are you symptomatic?

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Is that the signal of low platelet count 6 years 5 months ago #33930

  • Sandi
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drbean7218 wrote: who can tell me what's wrong with me


I would wager that you have ITP.
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Is that the signal of low platelet count 6 years 5 months ago #33933

  • drbean7218
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Just few red dots found since last week,but they disappeared after 24hrs

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Is that the signal of low platelet count 6 years 5 months ago #33934

  • drbean7218
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Sandi wrote:

drbean7218 wrote: who can tell me what's wrong with me


I would wager that you have ITP.

I am waiting for my doctor's instruction to try TPOs or any other alternatives

Since the effect of ivig is too short, we need solutions for maintaining platelets after the injection of ivig

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Is that the signal of low platelet count 6 years 5 months ago #33936

  • Vdeutsch85
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Keep us updated! :) .... Just so you know Nplate is the only thing that has worked for me...I'm gonna start calling it my friend n. I know others have responded well to Promacta on here as well.
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Is that the signal of low platelet count 6 years 5 months ago #33943

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Vdeutsch85 wrote: Keep us updated! :) .... Just so you know Nplate is the only thing that has worked for me...I'm gonna start calling it my friend n. I know others have responded well to Promacta on here as well.

At this moment, my plan is going to the combination of TPO and current treatment to stable the illness in a short period of time, since itp is really affect my job

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Is that the signal of low platelet count 6 years 5 months ago #33969

  • Vdeutsch85
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I am sorry to hear it's affecting your job! Try to be patient with the TPO's. it takes time to get the doseages correct, but have been a life saver for me!

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Is that the signal of low platelet count 6 years 5 months ago #33973

  • drbean7218
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Since ivig last for a short period of time, then the platelets will drop again. I'll try revolade after this treatment of ivig until cyc-a has reaction on my body

Is that revolade good or not

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Is that the signal of low platelet count 6 years 5 months ago #33979

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I think revolade is called Promacta in the United States. Many on here have had high success rates with it.

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Is that the signal of low platelet count 6 years 5 months ago #33981

  • drbean7218
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can it help patients to reach remission

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Is that the signal of low platelet count 6 years 5 months ago #33982

  • weirdjack
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drbean7218 asked: "can it help patients to reach remission"

It may do that for some people. Who knows why some go into remission and others do not?
However, remember that both Promacta and Nplate ARE NOT designed to give remission or even to give you 'normal' counts. They are considered 'maintenance' drugs. Both are designed to keep your platelet count in the 50k range....period.
I used Promacta for 3 years....it did exactly what it was designed to do, kept me around 50k. I expected nothing more.
Before you take either (ANY) drug, go to the manufacturer's websites and read their information. Both drugs are very good. Read about them, understand what they do, and what you can and cannot expect from them.
Neither drug is a magic bullet. There are no magic bullets for ITP.
.

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Is that the signal of low platelet count 6 years 5 months ago #33983

  • drbean7218
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At least, it can help me buy time and wait for the effect of cyc-a and presidione,rather than enter hospital every 2 weeks and perform injection for 5 days

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