ITP Support Association
2,981 members1,501 posts

Nplate causing "giant platelets"

Had anyone else had "Giant Platelets : Present" on their labs after just starting Nplate? Anyone at all? Trying to find out why this is happening and if it is normal / safe or even expected from Nplate treatment. 2nd injection is tomorrow.

Platelets went from 10 to 13 one week after first injection. I hope someone can shed some light on this! Can't find anything about giant platelets and Nplate.

14 Replies
oldestnewest

Hi, I haven't had this particular treatment however my platelets have always been giant. It's better if they are bigger, doctors said the bigger the better you don't need as many and if they're big they are really healthy. Hope this helps.

Reply

Thank you for your response! In the past 2 years of weekly blood testing, I've had about 7 different occurances of giant platelets being present. Hadn't seen giant platelets in a while until starting Nplate last week.

Do you have any info on why it's safe or better to have giant platelets? Thank you so much!!!

Reply

I can't say that I had any larger platelets when having NPlate (nothing was said) but it probably wouldn't surprise me if that happened. It did happen when I was first diagnosed and on prednisone but I never heard that comment again.

For me the thing to watch with NPlate was just how potent the drug could be and how quickly my counts would escalate if I was given too much at certain levels so you need to be careful of that. I would recommend keeping a record of the dosage given (in mcg/kg) and your count when you received it. I was on NPlate for 5 months before my ITP suddenly stopped and that was 2.5 years ago now. It was an incredible roller coaster of counts over that time starting at zero and peaking at 1.1M for 2 weeks and I am keen to hear how you go on it so good luck.

Robert

Reply

Thanks, Robert - really appreciate you responding. We started when platelets were 10.

Dosage was 250 mg week 1. Platelets went from 10 to 13. Week 2 dosage was 250 mg again (same dose) because doc said that since we saw a response already, we will keep the same dose to see what the numbers are next week.

Does that sound reasonable to you too?

Thank you again for your support.

Reply

That's sounds like the correct approach to me. It is best to take very small steps to start with because of its potency and I also found that it lasted in my body for about 2 weeks and so the second injection added to the one received the week before and had a multiplying effect which caught me out a few times resulting in some massive counts swings but it never felt any different. It initially took me 5 weeks to get a response (from 0 to 33) so you seem quite responsive after 1 week - well done! I even went to the trouble of graphing it all so we could predict what the next dose should be and it really helped.

Reply

Thanks again, Robert -- that's really helpful. When you were on Nplate, did you notice anything else in your blood results that seemed out of wack? Did Nplate increase or decrease other blood lines for you (Hemoglobin, etc.) How about changes in your liver or bone marrow functions? I so appreciate your insight!

Reply

I was not made aware of any other issues at the time and the only side effect I had was a constant mild headache (like a slight hangover) but that was all.

Interestingly I was also on Cyclosporine when I started NPlate and had only just finished 4 doses of Rituximab and there was some discussion about the effectiveness of this cocktail of treatments in putting people into remission. All up I had 7 different types of treatments and NPlate was the only one that worked and so I am quite interested on how it works for others like yourself.

Reply

When all of this started 4 years ago, we first started with Prednisone (which I still take 12.5 mg/day) We also tried Rituximab, Promacta, and Danazol. Nothing worked yet... we are hopeful about Nplate!

Reply

Also, has anyone had a bone marrow biopsy aspiration? We have had two thus far... any progressions of blasts or changes?

Reply

I read other peoples stories and I realise just how lucky I was in the end as, even though I was stuck at very counts for some time and was given some serious treatments , my whole ITP experience only lasted 9 months when one week my body just returned to normal and it is as if the whole experience had never happened.

1 like
Reply

I love your attitude of gratitude! Hope you'll always be blessed with good health and a good spirit. Hopefully our fate is successful Nplate.

Reply

Giant platelet disorders are rare disorders featuring abnormally large platelets, thrombocytopenia and a tendency to bleeding. Giant platelets cannot stick adequately to an injured blood vessel walls, resulting in abnormal bleeding when injured. Giant platelet disorder occurs for inherited diseases like Bernard-Soulier syndrome, gray platelet syndrome and May-Hegglin anomaly.

Reply

Hi, I’v been on weekly Nplate injections since 2010 to maintain my counts between 30-80k. Large platelets are imature platelets and the body’s attempt to provided enough platelets pto prevent bleeding, you had them before you started Nplate; they aren’t as effective as mature platelets but are better than nothing. Nplate stimulates your bone marrow to produce more platelets and is the only drug keeping me alive. Are you experiencing the effects of low platelets such as increased bruising, fatigue, irritability and depression? When I started Nplate it took two to three week to get to 20K. What dose are you on, are you receiving weekly injections? When you get to the end of your rope tie a knot and hang in there, it will get better!:)

Reply

I’ve been on Nplate since 2010, giant platelets are immature platelets; Nplate stimulates the bone marrow to increase platelet production and some are “giant “ platelets which is better than nothing . I receive weekly injections to maintain my count between 30 to 80 thousands and as low as 10 to 15 thousand with excessive bleeding. Other then occasional platelet clumping I’ve never had any negative effects.

This site has excellent educational section as does mayoclinic.org check them out. Be well:)

Reply

You may also like...