Doptelet (avatrombopag) experiences anyone?

Hello all - Wondering if anyone has experience with Doptelet they would like to share.  
I've taken Promacta in the past -  worked a bit for me keeping me 30-60 range for 2 1/2 yrs until it didn't - tried Tavalisse but unfortunately did not work.  Heme wants me to consider Rituximab or Splenectomy now - have avoided both of those options - then noticed small 44 pt study abstract that stated Doptelet works in many even after Promacta failure. 

What is the range of your count now?
Why does your hematologist feel a splenectomy will work?   

Hi MelA  -Count is 23 as of this week. (which is symptom free for me and close enough t o 30 that it keeps me calm)  went low as 9 and 15 in Feb and March while on Tavalisse.  I have made it clear to Heme that I'd like to leave splenectomy as last option but was open to rituximab. Honestly don't know his rationale yet. He is top in field like many, but I usually wait 45 min to get to talk talk to him for 20 min. (not sure if that is same everywhere but common with specialist visits in the states) I have fear of increased risk of infection for both those options that, for me, weigh against remission chances. So I guess the answer is I don't know why he feels splenectomy will work.  He sched initial consultation and I have visit with surgeon later this week just to get info on procedure.

I was kinda hoping to recycle a Promacta like drug before trying Ritux or splenectomy or maybe do wait and watch for awhile.  I've been more than 7 years under 50 now so my comfort level with wait and see seems higher than Heme doc.

   

Eltrombopag eventually failed me but Avatrombopag in conjunction with 100mg Fostamatinib twice a day works for me so well I'm on  a break from it to bring my count back down from above 800. I was only taking it once every 3 days this time. 

Was asking JVP because I know of someone [there was a group of us ITPers who would get together here] who went to London to do the indium test to see where her platelets were being destroyed - the testing showed the spleen.  She came back here, had a splenectomy and was ok for a couple weeks & count back down it 5k.  

Have you discussed with your hematologist about your hope to "recycle a Promacta like drug"?

MelA - Thanks for info/folIow-up : )   have appt with hematologist this Friday - plan to discuss Avatrombopag (Doptelet).  Since posting I found one small study of people who switched from eltrombopaq (Promacta) to avatrombopaq (Doptelet) and almost all did better on Doptelet. Also encouraging to see mrsb04 doing so well on it!
I think I've seen that post you are referring to. I've done a lot of reading posts here and med journal abstract reading (at least what isn't way over my head /you don't have to pay a subscription for) and although I'm happy for and supportive of people who posted here where a splenectomy and/or Rituximab has provided remission for them, I think I want to leave as last options. JVP

mrsb04 - Thanks for sharing/ the info - Glad you're doing so well with avatrombopaq and tavalisse!  .. and that avatrombopaq-Doptelet worked for you after eltrombopaq-Promacta  Great to Hear     Cheers JVP

I started on Doptelet about 4 months ago.  Prior to that I tried just about every treatment but my Platelet count never seemed to go higher than 50.  With Doptelet, my count is now 352.  I even had my spleen removed last November, but it did not increase my count. 

Thanks MoJo for the info and so glad Doptelet is working for you!

FYI - I decided to push for/try Doptelet and my Heme doc agreed, insurance approved, and start tomorrow - encouraged by your response and others in this forum - Cheers JVP

Hello JVP and others. I’ve been on doptelet for 5 months and it’s working. Just have to determine the correct dosage, which for me seems to be 5 times per week. My last platelet count was 116, and I get blood draws about once monthly now… instead of every week when I was at my worst. I hope you and others trying doptelet will have good experiences. No side effects worth mentioning besides fatigue in evening and occasionally mild petechiae on legs. This medication has been a breeze compared to side effects while taking prednisone… which didn’t work for me. I had IVIG, steroid, and platelet transfusion combined (platelets at 4) before starting doptelet.

Gave up on Fostamatinib/Avatrombopag/Pred  combo at end of May. Ava and Pred only since then.
On the 14th  July my count was 51. My current regime is 20mg Avatrombopag every 3rd day with Prednisolone 3mg/2mg/2mg.
I have been having  a blood test every Friday, however after seeing my Haemo Consultant yesterday  (17th) so long as my count stays above 50 this coming Friday I will be promoted to fortnightly bloods. 

Good news mrsb!!

Good luck JVP!!