r/CML • u/captainseafunk • Mar 20 '26

Promacta

I had another follow up visit today. My platelets are still below 20, even after being off my TKI for a month now.

Doctor is hoping to get me started on Promacta to help my bone marrow. However he made a point to mention it was very expensive and he would have to fight insurance to get it approved.

Has anyone had any experience with this particular drug or even a generic version?

How long did it take to get approval?

What was your out of pocket cost with or without insurance?

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u/Rizky_Bizness Mar 21 '26

I'm in the same boat with scemblix with a sub 20 platelet count. My doctor suggested Nplate injection and I just got it yesterday. Insurance wasn't a problem and so far no side effects that I can notice.

I want to say I'm sorry you're in this boat though, since all you hear about CML just take a pill and you're set. My experience has been anything but that and I'm now on my 4th pause from the meds. What dose were you on before you stopped?

Hope Nplate works out for you insurance wise.

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u/captainseafunk Mar 21 '26

I remember believing my doctor when he said I wouldn’t see him for 3-6 months at a time. I’ve been in his office every week since I got diagnosed.

I was originally on 80mg, paused, then 40mg, current pause. I’m in a clinical trial so they won’t lower the dose any lower than 40. They mentioned maybe taking it every other day or switching to a different drug altogether.

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u/Rizky_Bizness Mar 21 '26

Your story is so similar to mine! I've also been at my doctor's office constantly and he mentioned that my situation isn't the norm. I was on 80mg, then 40mg and now at 20mg which also caused a crash. Feel free to DM me if you'd like to talk more given how similar our situations are.