Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! 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!

Question

  • Kelirae24
  • Topic Author
  • Offline
  • 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
More
13 years 7 months ago #27763 by Kelirae24
Question was created by Kelirae24
I had a stroke on nplate a year ago I believe the doctor was at fault they kept making my platelets go over 200 and if they weren't at 200 they would increase I'm thinking of trying nplate again because right now I am using ivig and it's slowly not working as well as it was and I don't want to lose my emergency medicine incase of a car accident or something like that and even when I decide to have kids I know ivig is a safe treatment during pregnancy I just wanted some feedback from you guys thanks :) hope everyone's well

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

More
13 years 7 months ago - 13 years 7 months ago #27765 by Dean
Replied by Dean on topic Question
Why would you want to try Nplate again if it is what caused a stroke? Why do you feel the Dr is at fault?
200k is great, but I do not see why they would increase the Nplate at 200k(if that is what you are refering to)

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

More
13 years 7 months ago #27773 by Ann
Replied by Ann on topic Question
If the doctor was aiming for a count of 200 then they are most definitely at fault as they are supposed to aim for a count of around 50 in order to avoid clotting events. What I would do is find another doctor, ensuring that they are experienced with treating ITP, and ask their opinion.

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

More
13 years 7 months ago #27878 by Dean
Replied by Dean on topic Question

Ann wrote: If the doctor was aiming for a count of 200 then they are most definitely at fault as they are supposed to aim for a count of around 50 in order to avoid clotting events. What I would do is find another doctor, ensuring that they are experienced with treating ITP, and ask their opinion.


So, with Nplate you do not want counts at 200k?

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

More
13 years 7 months ago #27883 by Ann
Replied by Ann on topic Question

Dean wrote: So, with Nplate you do not want counts at 200k?

No, because all the platelets you have are new and large and extra beefy, too many can cause clotting.

The UK guidelines from the manufacturer say at a count of 150 you reduce the dose and a count of 250 you withhold the drug until the count falls.

I also asked to be tested for APS because that also tends towards clotting and would suggest that everyone on Nplate does the same.

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

More
13 years 7 months ago #27892 by Dean
Replied by Dean on topic Question
Thanks Ann. I was not aware of that with Nplate.

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

  • Kelirae24
  • Topic Author
  • Offline
  • 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
More
13 years 7 months ago #27947 by Kelirae24
Replied by Kelirae24 on topic Question
I would be happy at 50 I don't need a hundred or a remission would be nice lol but yes don't ever let them get over 180 on nplate I'm proof you could have a stroke and I don't want anyone to have to go through that it was horrible

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

  • Kelirae24
  • Topic Author
  • Offline
  • 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
More
13 years 7 months ago #27948 by Kelirae24
Replied by Kelirae24 on topic Question
And yes 200 is great for people who have normal platelets

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

More
13 years 7 months ago #27966 by Tom_P
Replied by Tom_P on topic Question
Thanks for the education! My NPlate treatment has got me up to 50 on a relatively low dose. I should make sure it doesn't rise condsiderably higher than this! I do feel quite fortunate to respond to this treatment though - side effects are negligible, so far so good.

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

You’re not alone. We have answers!
Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or pdsa@pdsa.org.

Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003  |  pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

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.