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!

Perhaps you can help, thank you

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
7 years 5 months ago #63413 by Sandi
Replied by Sandi on topic Perhaps you can help, thank you
I'm just wondering when she had her last N-Plate injection? If it was six days ago, it's likely that her counts peaked a few days ago and this count was catching her on the way back down. N-Plate does not always keep a patient up; sometimes counts drop back down right before the next injection is due. That could improve in time.
More
7 years 5 months ago #63421 by poseymint
Replied by poseymint on topic Perhaps you can help, thank you
Nplate needs time to work. Give an injection each week for 4 weeks and you will know more. I never have much response the first week- exactly like you said, but the next week it goes up. Example: In 2106 I started with a count of 1K. Got a dose of Nplate, next week 15K. Then keeping the dose the same, the next week 85K. Give it some time, the doses accumulate- hope it works for you!
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
7 years 5 months ago #63424 by Hal9000
Replied by Hal9000 on topic Perhaps you can help, thank you
Lau, unfortunately one can have more than one ITP antibody working against you. Combinations of rows (and responses) in the table are therefore possible. Don't fret too much though. Folks loose steroid response, IVIG response, or both, fairly often around here. Since there are no direct blood tests for all 4 antibodies, it becomes a guessing game of what has happened when a change in response occurs.

Rather than go through all the things that could have happened it might be more useful to explain what probably happened, then, reevaluate if evidence conflicts. I say 'probably' because it happens a lot. What probably happened is that your daughter had a row 1 response at the beginning. When she relapsed and lost her steroid response she likely became a row 1 and row 2a combination. With steroids not being able to help anymore with row 2a, she now needs a higher dose of Promacta/Nplate to get counts up.

The nice thing about row 2a or 2b is that it can often go away / go into remission after treating with just Nplate (or Promacta) alone. This can take many months. But it appears that combining steroids with Nplate (or Promacta) speeds the process. Doesn't seem to matter if it's row 2a or row 2b. Taking both seems to reduce the time to weeks.

If what I've described is actually the case, once her platelets start responding to the higher Nplate dose, the Nplate dose she needs to maintain counts should become less and less. During this transition period, holding counts in the 100 to 150 range is probably ideal.

I don't want to get 'too far over my skies'. I'm pretty far now, I'll stop here. Hope this helps.
More
7 years 5 months ago #63426 by Laufromfrance
Replied by Laufromfrance on topic Perhaps you can help, thank you
Thank you very much Sandi, Poseymint and Hal.
Everything is clear for me.
The second shot was today. The same as one week ago. We must now wait and see what will happen.
Thank you Hal for the whole explanation and the time you gave us to share it.
With your answers I feel more peaceful.
Have a nice weekend.