Immune Thrombocytopenia Purpura (ITP): What helps?

I was diagnosesd with ITP February, 2023. Since then all the medications/protocols prescribed to stabilize my platelet level have had either been ineffective or, the more successful ones have caused unbearable side effects, greatly affecting the quality of my life. I would love to hear feedback from patients on a combination of Tavalisse, 100 mg. And Doptelet, 20 mg. Thank you.

Hi @lfn2124, I moved your question ITP to this existing discussion so you can connect more easily with others:
- Immune Thrombocytopenia Purpura (ITP): What helps?
https://connect.mayoclinic.org/discussion/idiopathic-thrombocytopenia-prpura-itp/
Members like @endoman246 @merchant700 @agfromtheuk and others have mentioned having experience with medications like Doptelet (avatrombopag) and/or Tavalisse (fostamatinib).

LFN, have you started this protocol yet?

Yes, I am taking Tavalisse every other day and Doptelet daily.

Hi Jimmy,

It took a while for receiving the information from the hospital my girlfriend stayed firstly.
They did the test but haven’t distributed the result so far. The current hospital re-tested for HPylori but both were negative.
By today they start the therapy with rituximab, hoping it helps.
Will post here all major updates.
Many thanks to you and all others for sharing your experiences with us.

-Oliver

You need to do bone marrow biopsy to detect MDS

Has anyone had success in treating ITP? It is an autoimmune disease that attacks the platelets in the blood that reduces the ability for the blood to clot. I’ve been on steroids for about 4 months, was taken off them about 3 weeks ago, and have just been put on the medication, Promacta, which was developed specifically for ITP, but my platelet count doesn’t seem to be responding.

Welcome, @gwilli. To help introduce you to other members living with ITP, I moved your post about treatment to this existing discussion:
- Immune Thrombocytopenia Purpura (ITP): What helps?
https://connect.mayoclinic.org/discussion/idiopathic-thrombocytopenia-prpura-itp/
Click the link to read previous posts and ask questions. You'll meet others who have experience with eltrombopag (Promacta), like @emmalapp @et09 @vishu1009 @kshizzle1304 @jaynep @rockitman and others.

See all discussions related to ITP using search https://connect.mayoclinic.org/search/discussions/?search=ITP

How long have you been on eltrombopag (Promacta)?

My son was diagnosed on his 6th birthday, he is now 24, and also autistic( he is verbal, but developmentally he will never be above a 10 yr old) he has had flair ups and bouts of remission all of his life with platelets never dropping below 10. Until this past Christmas 2023, when I noticed bruises and petica, took him for blood work platelets were at 4, he also got the 1st time also had bleeding on and in his brain causing a debilitating headache. He has been getting weekly IVIG, as well as oral Prednisone, metrophenalate, on May 15 2024 he had his spleen removed and is now still going for the weekly IVIG, on all same meds as well as Doptelet and his platelets stay between 0 to the highest of 2. It is almost the bugging of August 2024, I just wanted to know if anyone else has had a similar experience that maybe got better to give me and him some type of hope to hold on to because it's getting really hard to trust a hope.

I’ve been on Promacta going on 3 weeks. My doctor called me at the end of the 2nd week to tell me that it is not working as he hoped. My platelets went down from 86 to 1 so he upped my dosage to 100mg from 50mg. I will be going in tomorrow for bloodwork and to discuss my path forward.

Welcome to Connect, @jennleeman. My goodness, your son’s condition must be so frustrating and worrisome for you. I swear there’s little worse than feeling helpless when it comes to taking care of our kids…no matter their age!

Hopefully someone with ITP experience will pop into the conversation and be able to offer you some assistance. It sounds as though your son has a good team behind him and giving him care with the Doptlelt to increase his platelets and IVIG infusions to help his weakened immune system. But you’re obviously concerned that he isn’t having as positive of a result as you’d hoped for.

Have you considered a 2nd opinion for him from a large medical/teaching facility like Mayo Clinic?
If you’re interested in requesting an appointment at any one of the 3 locations in Rochester, MN, Phoenix, AZ or Jacksonville, FL here is a link you can follow to get you started: http://mayocl.in/1mtmR63

It’s easy to lose hope when you feel like you’ve run out of options for your son, but please, never give up. The only thing stronger than fear, is hope. So try to stay postive while advocating for your son’s health.

From my understanding it’s important to distinguish ITP from other causes of thrombocytopenia, (low platelets). They can have similar presentations but may require different treatments. Has his doctors determined if this was primary or secondary to an underlying condition?