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My Doptelet/Avatrombopag Treatment History 7 months 2 weeks ago #71118

  • momto3boys
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I figured I'd better get recording my Doptelet/Avatrombopag usage before I start forgetting. A continuation of the "My Promacta Journey" thread, which I maintained as a treatment history of my time on Promacta/Eltrombopag.

After failing off of Tavalisse (blood pressure issues, which is too bad, because I think it was working for my counts), I was giving my body a few weeks to recover before starting the Doptelet. My counts were in the 30s and 40s, which seems to be my current normal.

Unfortunately, a few weeks ago I ended up dropping down to 19k. This drop, of course, had to coincide with my monthly bleeding, so on to the Doptelet I went in a hurry. Luckily, the Doptelet actually increased my counts decently fast. I was having horrific bleeding (what else is new :eyeroll:), but I managed to get it stopped before a hospital visit was needed. Of course, now I'm very anemic (hemoglobin is around 9 and hematocrit is also low *sigh*), but it's good to know that Doptelet did something positive in a timely manner.

Related lab results
31 March 2021 platelets 19,000 (last count before starting Doptelet)
07 April 2021 platelets 39,000 (about a week after starting the Doptelet)
15 April 2021 platelets 104,000
21 April 2021 platelets 80,000

So, That 104k count was a bit concerning, because I'm very paranoid about not getting too high on a TPO-RA drug (stroke risk! aaaahhh!). However, the following week with the 80k seems good. That's plenty high for me to actually visit the dentist (I haven't had a count good enough to go in at least 2 years). I'll add to this thread as I continue my weekly lab work until I see some kind of stability with the new medication. I go in to see my hematologist this week, so we'll see what he has to say, but it looks like Doptelet is working great so far. No real side effects, just some headaches at the beginning, which have since tapered off as I've gotten used to it.
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My Doptelet/Avatrombopag Treatment History 7 months 1 week ago #71137

  • ImPatient
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Great that it's working for you and without major side effects! I hope your anemia gets better quickly too.
Indeed good to mention that high counts on such a medication can be dangerous. If I hadn't read about that here a year ago I might have let a doctor convince me to double my dose while I already had 160 or so.

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My Doptelet/Avatrombopag Treatment History 7 months 1 week ago #71139

  • momto3boys
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Great that it's working for you and without major side effects! I hope your anemia gets better quickly too.
Indeed good to mention that high counts on such a medication can be dangerous. If I hadn't read about that here a year ago I might have let a doctor convince me to double my dose while I already had 160 or so.

Oof! a doctor wanting more than 160k on a TPO-RA? That's not a good plan. I'm glad that you were well educated and could explain why that was not a great idea.
And yea, the Doptelet is working really great so far. I just saw my doctor yesterday, so I'm going to post an update below.

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My Doptelet/Avatrombopag Treatment History 7 months 1 week ago #71140

  • momto3boys
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Latest labwork:
28 April 2021 platelets 123,000

I went in to see my hematologist yesterday, and we had a good chat as always. He's really pleased with how the Doptelet/Avatrombopag is working and wants to keep me at the same dosage until I develop some regularity in my counts.

I expressed my concerns about not going too high with the platelet numbers (I'm always more worried about going high on a TPO-RA than the alternative), and he was fine with titrating the dose down (cutting out one of the daily pills would be the first modification) if my count goes above 150,000. He did say that in his experience, the adverse clotting/stroke incidents occur at much higher counts than 150k, but he was receptive to my concerns and we came up with a plan that we could both agree on.

Regarding the anemia, he's prescribed the Feraheme infusions for me that I should be able to start in the next few weeks. Those worked well in the past, so I'm looking forward to not feeling like I'm dying when I walk up the stairs! He's hopeful that we can control the runaway monthly bleeding by managing the counts better with the Doptelet and that will make me less fragile from an anemia perspective. Hopefully I won't require iron infusion rescues as much in the future.

So, a good update from me.

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My Doptelet/Avatrombopag Treatment History 7 months 1 week ago #71141

  • momto3boys
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Oh, and as an aside, he did mention that because Doptelet/Avatrombopag is a newer medication, they don't have as much data on dosage titrations and the effect that those can have on drug effectiveness. They have a vast amount of data on Promacta/Eltrombopag because of its extensive and widespread use, but they are still new at working with the Doptelet/Avatrombopag.

He was also commenting to the doctors he was with (doctors are always shadowing him), that it's surprising that Eltrombopag and Avatrombopag bind at the same site but can have such different outcomes in patients. They still don't understand the exact difference in mechanism between the two. Just an interesting aside!

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My Doptelet/Avatrombopag Treatment History 7 months 1 week ago #71144

  • poseymint
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Mom~ thanks for sharing this great information about a new drug!

What dose are you on? Just wanted to mention for everyone, if you do decide to reduce your dose by eliminating one day per week there is the risk of crashing with the TPOs. I don't know anything about Avatrombopag but just have seen the difficulty in trying to "fine tune" the counts. It can backfire. I've had experience with that on Nplate, not so much on Eltrombopag. And yes, as you said, there is the risk of stroke when numbers get high. You are well educated and experienced so I'm sure you'll find a good balance.
I had side effects on Promacta/Eltrombopag like memory lapses, cognitive difficulties so can't really take it. I'm very curious if Avatrombopag would be different.? Sounds like they don't know. Thanks, this is hopeful information!
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My Doptelet/Avatrombopag Treatment History 7 months 1 week ago #71145

  • momto3boys
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I'm on the default starting dose, which is one 20mg tablet twice a day (with food! woo hoo! No eltrombopag here, lol)

As far as side-effects go, for me thus far there is a huge difference. I was having problems with very bad bone pain in the hips with eltrombopag that would come and go (I was on it for around 2 years or so). I also felt like I had some minor vision disruptions and slight brain fog. Nothing significant at the time, but I am not experiencing any of that on the new medication yet. I had some minor headaches when I started the Doptelet/avatrombopag, but those have mostly subsided. Absolutely no other side effects so far.

And, of course, titrating the dosage of any medication can be a challenge. We'll cross that bridge when we come to it in the event that my counts rise much beyond 150k, but, in my treatment history, I've not been the kind to ever crash down into the single digits. When I get low, it's usually in the teens, and then the count will often rebound on its own.

Another interesting point of comparison is the count range I'm achieving. On Promacta/eltrombopag, I primarily achieved counts in the 40s. Even when having counts in that range as an average, I was still experiencing quite a few dips as well as a few higher spikes. It didn't really give me consistent/stable numbers. I'm curious to see how I do with Doptelet/avatrombopag over time. Perhaps I can achieve more stability? Time will tell. For now, I'm just happy that I can finally go to the dentist with these good counts, lol! Best of luck to you in making your future treatment decisions.

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My Doptelet/Avatrombopag Treatment History 7 months 1 week ago #71148

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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Mom
I have found this on a UK medicines website. It appears as a table but when I copied it it would not past as a table. I 've adapted it so hope it makes sense.
Here is the link to the site but I don't know if you will be able to access it. I have posted UK links before and people have told me they cannot access them
www.medicines.org.uk/emc/product/11837

Avatrombopag dose adjustments for patients with primary chronic immune thrombocytopenia
Platelet count (x 109/L), Dose adjustment or action
< 50 after at least 2 weeks of avatrombopag treatment
• Increase One Dose Level per Table 3.
• Wait 2 weeks to assess the effects of this regimen and any subsequent dose adjustments.
> 150 and ≤ 250
• Decrease One Dose Level per Table 3.
• Wait 2 weeks to assess the effects of this regimen and any subsequent dose adjustments.
> 250
• Stop avatrombopag.
• Increase platelet monitoring to twice weekly.
• When platelet count is less than 100 x 109/L, decrease One Dose Level per Table 3 and reinitiate therapy.
< 50 after 4 weeks of avatrombopag 40 mg once daily
• Discontinue avatrombopag.
> 250 after 2 weeks of avatrombopag 20 mg weekly
• Discontinue avatrombopag.
Table 3: Avatrombopag dose levels for titration in patients with primary chronic immune thrombocytopenia
Dose≠
Dose Levels 1-6
6: 40 mg once daily

5: 40 mg three times a week AND 20 mg on the four remaining days of each week

4: 20 mg once daily*

3: 20 mg three times a week

2: 20 mg twice a week OR 40 mg once weekly

1: 20 mg once weekly

* Initial dose regimen for all patients except those taking moderate or strong dual inducers or moderate or strong dual inhibitors of CYP2C9 and CYP3A4/5, or of CYP2C9 alone.

≠ Patients taking avatrombopag less frequently than once daily should take the medication in a consistent manner from week to week.

Dose Level 3: Three non-consecutive days a week, e.g. Monday, Wednesday and Friday

Dose Level 2: Two non-consecutive days a week, e.g. Monday and Friday

Dose Level 1: The same day each week, e.g. Monday

In the case of a missed dose, patients should take the missed dose of avatrombopag as soon as they remember. Patients should not take two doses at one time to make up for a missed dose, and should take the next dose per the current regimen.

Avatrombopag can be administered in addition to other ITP medicinal products. Platelet counts should be monitored when combining avatrombopag with other medicinal products for the treatment of primary ITP in order to avoid platelet counts outside of the recommended range, and to determine whether the dose of either medication should be reduced.
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My Doptelet/Avatrombopag Treatment History 7 months 1 week ago #71160

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Thank you so much for taking the time to type that out mrsb! I'm going to save that information as well as the link (it worked fine for me) for reference. I'm happy to see my feelings about counts greater than 150k validated, and I'd say those titration levels look like a great place to start if necessary.

I appreciate you always being there with the great medical information and links. Thank you!
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My Doptelet/Avatrombopag Treatment History 7 months 6 days ago #71165

  • mrsb04
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Mom
You're welcome. I'm glad the link worked. It's the site nurses use the most.

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My Doptelet/Avatrombopag Treatment History 5 months 4 weeks ago #71353

  • BBarrett
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  • Diagnosed with ITP July 2018 Dexamethasone didn't work, Rituxan treatment lasted 9 mos . Tried Promacta for about one year but never stabilized. Started Doptelet 1/2021 and it seems to be working. Lowest platelet count since diagnosed has been 5k.
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I started Doptelet in January of this year. My hematologist put me on the 20mg per day the manufacturer recommends for starting and it was WAY too much for me. My count went up to 745k- yikes. I also had a massive migraine for 4 days (I never get migraines) that week. My hematologist now has me on what seems to be a working dosage of 20mg every three days which keeps me on a 60k to 150k to 60k wave and I don't have headaches anymore from it.

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My Doptelet/Avatrombopag Treatment History 5 months 1 week ago #71595

  • momto3boys
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I started Doptelet in January of this year. My hematologist put me on the 20mg per day the manufacturer recommends for starting and it was WAY too much for me. My count went up to 745k- yikes. I also had a massive migraine for 4 days (I never get migraines) that week. My hematologist now has me on what seems to be a working dosage of 20mg every three days which keeps me on a 60k to 150k to 60k wave and I don't have headaches anymore from it.

Thanks for sharing your experiences. Luckily, I haven't spiked quite so high, but it's great to know that you've been able to find a dosing schedule that works to keep you in the safe range!

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My Doptelet/Avatrombopag Treatment History 5 months 1 week ago #71596

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Latest labwork:
26 June 2021 platelets 154,000
Obviously the Doptelet is keeping my platelets in the normal range. It's so weird to see the platelet numbers not coming back as low with all kinds of scary exclamation marks to note how far they are from normal!
Really nothing in the way of side effects, and I'm loving the lack of dietary restrictions. I'm okay with the current count, but will get antsy if they go any higher. They did dip somewhat in the middle, so I'm guessing that they are bopping around somewhat and that this 154 is on the higher end of their new range. Time will tell.
Going in for my iron infusion tomorrow (finally! covid caused a huge wait for that), so I expect that my platelets will come down somewhat after that procedure based on previous discussions with my hematologist. I will hopefully not wait a full month before going in for lab work again, so will likely have an update in two weeks.

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My Doptelet/Avatrombopag Treatment History 5 months 1 week ago #71609

  • ImPatient
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Great that your platelets are in a normal range + no side effects!

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My Doptelet/Avatrombopag Treatment History 4 months 2 weeks ago #71682

  • BBarrett
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  • Diagnosed with ITP July 2018 Dexamethasone didn't work, Rituxan treatment lasted 9 mos . Tried Promacta for about one year but never stabilized. Started Doptelet 1/2021 and it seems to be working. Lowest platelet count since diagnosed has been 5k.
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momto3boys- So happy to hear Doptelet is working for you as well. My numbers on Doptelet also seem to do a small wave with the trough being around 115 and the crest around 200. I'm super glad to be above 100 so I don't experience the fatigue I was having when under 75.
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My Doptelet/Avatrombopag Treatment History 4 months 5 days ago #71693

  • xhemajl
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Hello,
I am 25 years old male, who was diagnosed with ITP since 6 years.
The Thrombocytes stay above 30k often for some months after using cortisone, and then after some time they fail under 30k.
Now, my Hematologist suggested me to start using Doptelet because she said that it does have fewer side effects as cortisone. I had 24 K this day that I started with Doptelet and just after 4 days of using 20 mg of it daily, my Platelets count reached 265 K, the best count since 6 years that I remember.
I don't have any side effect, and is working very well. I will make another blood test now after 2 weeks of that on this Wednesday.

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My Doptelet/Avatrombopag Treatment History 4 months 2 days ago #71700

  • momto3boys
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Hello,
I am 25 years old male, who was diagnosed with ITP since 6 years.
The Thrombocytes stay above 30k often for some months after using cortisone, and then after some time they fail under 30k.
Now, my Hematologist suggested me to start using Doptelet because she said that it does have fewer side effects as cortisone. I had 24 K this day that I started with Doptelet and just after 4 days of using 20 mg of it daily, my Platelets count reached 265 K, the best count since 6 years that I remember.
I don't have any side effect, and is working very well. I will make another blood test now after 2 weeks of that on this Wednesday.


Congratulations on your good results with Doptelet. Cortisone/steroid side effects are awful, so I agree with you!

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