!!! 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!

NPLATE Question

More
13 years 6 months ago #26013 by Bub
NPLATE Question was created by Bub
My dad has been taking NPLATE for a number of years. His previous doctors always aimed for a platlet count of 50,000 and if the count was above that, he was not required to get a shot. His current doctor is telling him that he has to have the shot weekly if his counts are not 250,000 per FDA guidelines. NPLATE denies this is an FDA requirement. I would appreciate any input on how others are reciving NPLATE and whether weekly shots are being required.

Thanks to all in advance!

Lori

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

More
13 years 6 months ago #26032 by Wife#1
Replied by Wife#1 on topic Re: NPLATE Question
My husband took Nplate for at least three years, but the side effects of headaches and dizziness were increasing so he asked to stop it. Nplate is not intended to get the platelets up to "normal", but to maintain a safe level of a range from 30,000 on up. My husband seldom got over 100.000. He did have the shot every week, even if the count was over 50,000, and maintained the range well until he had a sudden drop a few months ago. I think the MD's statement of having to have the platelets at 250,000 is way out of line and I believe Amgen, the maker of Nplate, does not say that.
The following user(s) said Thank You: Bub

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

More
13 years 6 months ago #26036 by Ann
Replied by Ann on topic Re: NPLATE Question
I've used it for nearly three years and I aim for a count of 30 to 50. I agree that 250 is far too high for this drug. I worry more about clotting than I do bleeding so I'd rather be lower than high.
The following user(s) said Thank You: Bub

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

More
13 years 6 months ago #26046 by Bub
Replied by Bub on topic Re: NPLATE Question
Thanks for the feedback. Has anyone taking NPLATE been given the option of not taking the shot weekly if the counts are holding above 50,000?

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
More
13 years 6 months ago #26047 by Sandi
Replied by Sandi on topic Re: NPLATE Question
So what would happen if he'd just say no?

I wouldn't get the shot with higher counts either.

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

More
13 years 6 months ago #26059 by Ann
Replied by Ann on topic Re: NPLATE Question
Yes, Bub, people do go to fortnightly (two weekly) injections, someone here on the forum does one every three weeks. I have also missed weeks out when my count is high enough as I am on the lowest dose and can't therefore simply lower the dose as I would if my count were over 100. I self inject so it's easier for me.

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

  • weirdjack
More
13 years 6 months ago #26061 by weirdjack
Replied by weirdjack on topic Re: NPLATE Question
I do not think that is an FDA requirement. This is what the PDF from Amgen's website says:
[url] www.amgen.com/medpro/products_nplate.html [/url]

(Recommended Dosage Regimen)
Use the lowest dose of Nplate to achieve and maintain a platelet count ≥ 50 x 109/L as necessary to reduce the risk
for bleeding.

and..............................

(Adjust the dose as follows)
• If the platelet count is < 50 x 109/L, increase the dose by 1 mcg/kg.
• If platelet count is > 200 x 109/L for 2 consecutive weeks, reduce the dose by 1 mcg/kg.
• If platelet count is > 400 x 109/L, do not dose. Continue to assess the platelet count weekly. After the platelet count has fallen to < 200 x 109/L, resume Nplate at a dose reduced by 1 mcg/kg.

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

More
13 years 6 months ago #26070 by Ann
Replied by Ann on topic Re: NPLATE Question
The guidelines are different in the UK ..

If the count is > 150 for 2 weeks, reduce the dose
If the count is > 250 do not dose.

I never waited for two weeks and always lowered the dose after one high week. The OP's doctor is simply saying what he wants to do but afraid that that won't be enough to convince the OP so is trying to put some other force behind it by saying it comes from the FDA. In fact Amgen will say that the doctor can make their own rules to suit the patient's particular situation.

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

  • shorty
  • Offline
  • Diagnosed with ITP at age 21. Currently (age 53) in remission for the past year. Recently diagnosed with Rheumatoid Arthritis(2015).
More
13 years 5 months ago #26733 by shorty
Replied by shorty on topic NPLATE Question
my dr. says 50K

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

More
13 years 5 months ago #26734 by Ann
Replied by Ann on topic NPLATE Question
Yes, 50 is the aim but they do often go higher on Nplate. It's difficult to get a stable count.

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.