Immune Thrombocytopenia Purpura (ITP): What helps?

Hi @Merhant700,
I have just read your post, my Husband Alex also has ITP, with no reason! He has had it for three years, he is on Avatrombobag 20mg, and I find these so erratic, we still have not found a dose that keeps Alex within a stable range, this has been going on since June. (three Platelet transfusions later) still erratic readings, can I ask how you found getting to a stable level with this medicine. Many Thanks
Jan Green

Welcome to Mayo Connect, @schielekate. Oh my goodness, this must be really scary for your daughter (and you!) As a mom, I can understand how concerned you must be to not see any improvement in her platelet level. With platelets so low it’s not easy protecting a 10 year old while she’s at school.

While you’re waiting for other members with ITP to respond I found several articles on ITP and the good news is that children often grow out of this. But in the meantime that’s not much comfort when your little girl is sick. I’m sure these meds are no fun to take either. Prednisone is a wonder drug but it can have its own share of side effects.
If you haven’t seen them already, here are some articles in ITP:
Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/symptoms-causes/syc-20352325
~~~~~
Standford Medicine
https://www.stanfordchildrens.org/en/topic/default?id=immune-idiopathic-thrombocytopenia-purpura-90-P02315

~Platelet disorder Support Association. https://www.pdsa.org/about-itp/living-with-itp.html

Is your daughter seeing a hematologist, a doctor who specializes in blood disorders?

Good morning,
I decided to find a support group or some way I could find more information about the condition ITP my ten-year-old child was diagnosed with at the beginning of the summer back in June. So far, her platelet count has been at its highest at a 22 after an infusion, but the last two blood draws she is at a 2. The last blood draw at a 2 was after steroids and we have started her on the medication Promacta. I am worried about the lack of positive response to medications and the progression of this condition for her. She is worried to be at school and the meds have been a struggle. Asking for advice and I would like to get insight on living with the diagnosis on a daily for those of you experiencing ITP. Thank you!

Hi Colleen,
Thanks! Yes I have a treatment plan. Just wondering about others

I was diagnosed in 2017

@sherpik57 Welcome to Mayo Clinic Connect! Here is what Mayo Clinic has to say about ITP
https://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/symptoms-causes/syc-20352325
Learn as much as you can about ITP because it will make it so much better for you. You’ll learn what questions to ask and not be afraid to ask them. I see that you also posted under blood disorders which is great. You should have lots of people answering you!
If I may ask, how did you find MC Connect?

Welcome, @sherpik57. I moved your question about ITP to this existing discusion:
- Immune Thrombocytopenia Purpura (ITP): What helps? https://connect.mayoclinic.org/discussion/idiopathic-thrombocytopenia-prpura-itp/

I did this so you can read through previous posts and connect easily with fellow ITP members like @naiviv @jimmyb63 @kewp @emcdanie2006 @tonyscrow @apb @gdavid143 @lulujuice @cathy07 and many others.

sherpik, has treatment been recommended for you? What questions do you have?

Looking to discuss this disorder as I was just recently diagnosed and do not know much about it other than what I’ve been told by my doctor. Any information greatly appreciated 😊

Hi apb,

You are not alone! I was diagnosed with TTP in 2009. The cause is unknown but it is similar to ITP. In TTP an enzyme (Adams T13) that produces platelets shuts down. I am treated with plasma pheresis and prednisone (80 mg then eventually taper off). Although the Drs. have said this is usually one and done, I have had 5 episodes. I am hospitalized and each time my hospital stay has been less. My lowest platelet was 6,000. The only symptom I noticed the first time was extreme fatigue. In the other episodes my symptoms have gradually added rashes, bruising, feeling dehydrated, headaches and dark amber colored urine. These symptoms are very consistent with TTP. I cope by resting when I can and glad when I am able to do normal activities. I did gain weight each time and am addressing the cumulative weight gain from each episode. (I got a new puppy and walking everyday). I was treated with Rituxin (rituximab) the first four episodes, but my most recent episode December 18,2022 I didn’t receive Rituximab, just Prednisone. I have labs regularly and try to look out for symptoms. I have diabetes that started as pre-diabetes and eventually over 2 decades became diabetic. The prednisone contributes to higher blood sugars. I hope this helps.

Blessings always,
Lou Ann

Please may I ask you further? Do you think the symptoms I mentioned are the condition or side effects of the prednisolone? I only knew I was ill because of unexplained bruising. The symptoms have crept on over the weeks.