Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC:

My 12 year old daughter with Chronic ITP 3 months 1 week ago #72333

  • raj369459
  • Offline
  • Posts: 13
  • Thank you received: 2
Hi All,
My 12 year old daughter was diagnosed with Chronic ITP in Jan 2020 and since then her platelet counts have been a roller-coaster ride. She received 1st Covid vaccine (Pfizer) in Jan 2022 and her platelets nosedived from 100K to 2,000 and were never in double digits since then. Currently, her hematologist is giving her Rituximab and she just finished her 4th dose. Last week her platelets went up to 277K.
We need to travel to India next month and not sure the risks involved with Rituximab and Covid 19. Since she is not eligible for 2nd dose of Covid vaccine (given adverse reaction to 1st dose in Jan 2022), is it safe to travel with her? If yes, what are the precautions to take while travelling apart of usual medications such as Promacta, Sirolimus etc?
Thank you for your advice!

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

My 12 year old daughter with Chronic ITP 3 months 1 week ago #72334

  • RR01
  • Offline
  • Posts: 33
  • Thank you received: 2
Hello raj ,
Sorry that your daughter is going thru this tough time . Rituximab by itself makes one more prone to infections and I would suggest if you can should postpone the travel. She is already going thru a lot at this young age , why risk anything more. Just my thought . I don't have any experience with Rituximab but I did IvIG and dint have any sustained result with that , Dr. suggested Rituxan but I said no. I havent gotten my booster yet because of my low numbers . I have been postponing my travel to India as well .
The following user(s) said Thank You: raj369459

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

My 12 year old daughter with Chronic ITP 3 months 1 week ago #72336

  • MelA
  • Offline
  • Posts: 991
  • Karma: 2
  • Thank you received: 329
Personally I'd ask my daughter's hematologist the questions!  He/She would have those answers for you.
 
Since she just finished her 4th infusion of Rituximab was that her last one?
When is her next blood work?   Her count was really good last week, hope it stays up!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: raj369459

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

My 12 year old daughter with Chronic ITP 3 months 1 week ago #72339

  • raj369459
  • Offline
  • Posts: 13
  • Thank you received: 2
Yes, I have asked these questions to the hematologist and she said if the platelets are stable for 2 weeks, then we can consider. But I still need to ask her regarding the Rituxan infusions (last week was the 4th dose and the last one) and the implications it can have to tackle Covid infection or other viral diseases. Her next blood work is next Tuesday. Hope the platelets stay in normal range. Thank you!

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

My 12 year old daughter with Chronic ITP 3 months 1 week ago #72341

  • MelA
  • Offline
  • Posts: 991
  • Karma: 2
  • Thank you received: 329
 Let us know what her count is next week - sure hope it is up at a real good count!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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

My 12 year old daughter with Chronic ITP 3 months 4 days ago #72348

  • raj369459
  • Offline
  • Posts: 13
  • Thank you received: 2
Update on this week's CBC count: My daughter's platelets went up to 282K this week. Spoke to hematologist and she said although her platelets are normal, it's safe for her not to travel and that too internationally because of Rituxan. For now we decided not to travel with her and would plan next year. Thank you for all your suggestions!

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

My 12 year old daughter with Chronic ITP 3 months 3 days ago #72351

  • MelA
  • Offline
  • Posts: 991
  • Karma: 2
  • Thank you received: 329
Very good to hear your daughter's count is still good raj - that is wonderful!   I am sorry you needed to cancel your trip but as you said there is always next year.   
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: raj369459

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

My 12 year old daughter with Chronic ITP 2 months 4 weeks ago #72355

  • raj369459
  • Offline
  • Posts: 13
  • Thank you received: 2
Unfortunately, my daughter's platelets went down to 4,000 today. Does this mean Rituxan didn't work or stopped working? Not sure what to do to improve her platelets. The only option left is splenectomy, but in my opinion she is too young for that. Also, there is no guarantee splenectomy would increase her platelets as the efficacy rate is just 40% overall.  Please let me know if anybody has this situation and if you tried any other treatment. Thank you!

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

My 12 year old daughter with Chronic ITP 2 months 4 weeks ago #72357

  • mrsb04
  • Away
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
  • Posts: 1992
  • Karma: 7
  • Thank you received: 570
I see from a previous post that she has tried Promacta but no mention of NPlate. Would that be an option?

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

My 12 year old daughter with Chronic ITP 2 months 4 weeks ago #72361

  • RR01
  • Offline
  • Posts: 33
  • Thank you received: 2
Sorry to hear that Raj , did IvIG hold up her platelets for a while ? If yes can that be done a little more frequently? What does your hematologist suggest , I have heard people using a combination -promacta+prednisone or nPlate+prednisone . Your hematologist should be able to give you some options , splenectomy is again not guaranteed is what everyone says.. We will have to exhaust all options before you go for that

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

My 12 year old daughter with Chronic ITP 2 months 4 weeks ago #72362

  • raj369459
  • Offline
  • Posts: 13
  • Thank you received: 2
Sorry, I should have given complete history. My daughter's ITP started in Jan 2020. Below is the chronological order of treatments:
Jan 2020: IVIG (She had negative reaction to this, so they stopped after 3 doses)
Feb 2020: Prednisone (She was not responding to the expectation of Hematologist with 35mg, so they stopped)
Mar 2020: IVIG, Prednisone, Promacta, Platelet transfusions
Apr 2020: 4 weeks of Rituximab, Promacta (Rituximab didn't have any effect on her platelets)
May 2020: Increased Promacta to 100 mg from 75 and Sirolimus
Jun 2020: Promacta 150 mg and Sirolimus
Jul 2020: Promacta 100 mg and Sirolimus
Aug 2020: 4 weeks of Rituximab, Promacta (Rituximab didn't have any effect on her platelets), Promacta 100mg, Sirolimus
Sep 2020 to Dec 2021: Promacta 75mg, Sirolimus. During this period, she didn't get any other treatment as the platelets were still fluctuating but no bleeding symptoms
Jan 2022 to Mar 2022: After COVID vaccine, her platelets dropped suddenly and they increased Sirolimus and Promacta to 100mg
Apr 2022: 4 weeks of Rituximab, Stopped Promacta, introduced NPlate 4mcg, Sirolimus, one dose of IVIG
May 2022: NPlate 3mcg (this is when her platelets dropped from 282K to 4K), Sirolimus
 

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

My 12 year old daughter with Chronic ITP 2 months 4 weeks ago #72364

  • RR01
  • Offline
  • Posts: 33
  • Thank you received: 2
ohh, She has gone thru a lot of treatments :(  My platelets though low were quite stable in 40's until I received the Covid vaccine shots then they dropped significantly ( very low now). Please keep your spirit up there will be some option that will work out for her. Sometimes we just need to give the body some time I guess.. This ITP condition is like literally unpredictable :(

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

My 12 year old daughter with Chronic ITP 1 month 3 weeks ago #72416

  • Eli
  • Offline
  • Posts: 3
  • Thank you received: 0
Your poor babe. My almost 3 year old daughter is in the early stages. Just started with Promacta as she's had ITP for 6 months. I hope that you can find a good treatment for your daughter, or better yet, that her plateletes recover on their own. 

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

  • Page:
  • 1

Charity NavigatorGuideStar Seal NORD Member BadgeTHSNA logo