Immune Thrombocytopenia Purpura (ITP): What helps?

Thanks for responding… I look forward to following your journey..
I really hope I Never have To go off of N Plate it has been a wonderful solution in my case.
It can be so scary I hope everything goes well with you💜🙏🏼

@docheat72
Thanks for replying I look forward to following your journey…may I ask why did you have to transition?
I hope everything is going well for you. 💜🙏🏼

My daughter was diagnosed with ITP after a year of frequent Strep infections, platelets down to 2000, all other labs normal. Steroids had no effect, IVIG with only temporary improvement. Eltrombopag is working well but she is experiencing a lot of nausea and fatigue. Does anyone have experience with Avatrombopag? No one will touch her tonsils, but we are wondering if they are continuing to stimulate her autoimmune antibodies, regardless of negative swabs.

@jimmyb63
A negative bone marrow test for immune thrombocytopenia (ITP) is expected, as the purpose of the test is to rule out other conditions like leukemia or myelodysplastic syndrome, not to diagnose ITP itself.
https://emedicine.medscape.com/article/202158-workup.

@holly5, I believe other members like @agfromtheuk @johnbowrey @et09 @lfn2124 have experience with avatrombopag (brand name Doptelet)that they may be able to share.

Holly, has your daughter changed medications?

May of 2025 I found out I had ITP with a count of 1, I was scared to death and didn’t know how my life was going to change. Since then my life has been like a roller coaster physically, mentally and emotionally. My platelet counts were up and down with a medium of 40-60. I have had every medication to help but none seemed to do it so then was mentioned a splenectomy. I switched doctors and the one I have now is keeping my count above 80-130 with every week if needed if my count is below 50 a Nplate shot along with monthly IVIG infusions. I am also on Wayrilz 200 twice a day. It’s scary to me to think that I have to do this the rest of my life. I lost my job due to the extreme fatigue from ITP and medication so I’m trying to manage this the best I can. I have a wonderful wife who has been by my side from the beginning cheering me on. I wish I didn’t wind down on energy so often to do more around the house and yard but with prayers there will be a cure one day and of course I can learn how to manage this disease and life style better.

I was diagnosed with ITP in 1965 at the age of 12. At that time the "I" stood for "idiopathic", meaning that the cause was unknown. (It may not have been considered an autoimmune condition at that time.) My platelets were at 10,000. I was treated at Mayo with prednisone, with a dosage eventually increased to 125mg per day, but without platelets reaching an acceptable level. After a year on prednisone, my spleen was removed in 1966. Afterward, my platelets rose to normal and I was tapered off the prednisone. I'm fortunate to have lived a normal, active life for 50 years since then. Stretch marks from the rapid weight gain while on prednisone cover my body. I'm glad that there are other medications to treat ITP available now.