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TOPIC: Doptelet dosing Qs

Doptelet dosing Qs 3 months 2 weeks ago #68784

  • Hal9000
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PemP1, let me see if I understand.
Alternating doses of 40mg and 20mg is what you need long term. But, a bit of prednisone is required to get counts up initially. Have I got it?

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Doptelet dosing Qs 3 months 4 days ago #68854

  • ecoclayton
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Thought I would update you all on my Doptelet experience so far. 2 weeks in at 20mg a day and my platelets are up from 35 to 70. No side effects to speak of and hopefully it stays that way.

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Doptelet dosing Qs 3 months 4 days ago #68858

  • mrsb04
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Good news ecoclayton
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Doptelet dosing Qs 3 months 3 days ago #68867

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Happy for you ecoclayton!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Doptelet dosing Qs 3 months 2 days ago #68890

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Congrats ecoclayton , this drug may have possibilities ,my initial use of the drug was nothing , then shot to 278 , doc changed dosage , took me a month to start a daily dosage of one pill , about the time you started. Today I had a reading of 130 , so I'm sticking with the one daily dose ,it seems when you try a change it leaves you with nothing
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Doptelet dosing Qs 2 months 2 weeks ago #68960

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Update 4/23 latest check came back with 320k still taking one pill every morning. If my platelets are higher next time have to think about cutting the dosage but maintaining a daily schedule.

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Doptelet dosing Qs 2 months 1 week ago #68971

  • ecoclayton
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PemP1,
Wow your counts sure are jumping around. I am also still taking just 1 pill every morning as well. I don't get tested for another week. Fortunately, I am still not seeing any side effects with this Doptelet:) I sure wish there was an easy way to check my platelets at home. I am super curious as to where my counts are at and since I really don't show many symptoms when low it is hard to tell.

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Doptelet dosing Qs 2 months 1 week ago #68973

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That's the problem with this drug it can jump platelets substantially, I have no real side effects , except putting on water weight , so I weigh every morning and take lasics to keep my weight down , I have another week before my next check , in the mean time I'm sticking with the one a day regimen but sanding about one third of the pill off , hopefully keep the numbers level .

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Doptelet dosing Qs 2 months 5 days ago #69013

  • ecoclayton
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Update 5/6/2020. Just back from Dr and platelets are at 74. That is up from 70 a month ago. I am still not seeing any side effects and will be staying on the 20 mg / day dose. Next appt is in another month. I hope everyone is doing well!

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Doptelet dosing Qs 2 months 5 days ago #69020

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With 70 and 74 being the same you are staying stable and that is great!
Hope it continues - be sure to keep us posted!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Doptelet dosing Qs 2 months 5 days ago #69023

  • ecoclayton
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Yes, I agree 70 and 74 are the same, but there is something about the counts being higher than last time that makes you feel like progress is being made.

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Doptelet dosing Qs 2 months 5 days ago #69025

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Wonderful ecoclayton that you are doing so well on avatrombopag! Yes I do agree that it is encouraging when my counts are higher even a bit higher. Stability is great too. Wonderful that you aren't having side effects. Thank you for reporting about this new drug. Any information is very helpful. I just wish it wasn't so darn expensive. I'm on Nplate and its terribly pricey too. Hope the cost comes down in time.
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Doptelet dosing Qs 2 months 4 days ago #69037

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And you are so right ecoclayton - to us if there is an increase in count no matter what the increase is we feel so much better! ;)
Happy that you have been stable!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Doptelet dosing Qs 2 months 4 days ago #69039

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Well I was worried about my platelets getting higher , but today I dropped to six . Still going to stick with the one a day regimen .

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Doptelet dosing Qs 2 months 4 days ago #69040

  • mrsb04
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That’s like my counts on Romiplostim (NPlate), swung around all over the place. I never knew where I was it drove me crackers. I hope they settle PemP1
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Doptelet dosing Qs 2 months 3 days ago #69050

  • ecoclayton
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PempP1
It is crazy how this disease and the different medications affect us all so differently. My counts have never really jumped around much. They seem to slowly rise with meds (prednisone/doptelet) or slowly fall without meds.

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Doptelet dosing Qs 2 months 3 days ago #69055

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Thank you mrsb04 , crackers haven't heard that in a while , fortunately prednisone usually pulls me out , feeling better today with 30 mg dose and still doing daily dose of doptelet

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Doptelet dosing Qs 2 months 3 days ago #69058

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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PemP1
30mg of what Prednisolone or Avatrombopag?

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Doptelet dosing Qs 2 months 2 days ago #69061

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Prednisone and then continue with the Avatrombopag , which does not give me the bad side effects . For about a month l was feeling really great

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Doptelet dosing Qs 2 months 2 days ago #69065

  • mrsb04
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A one off dose of Prednisolone?

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Doptelet dosing Qs 1 month 3 weeks ago #69128

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PemP1, I have to wonder if your wild count extremes may be due to a bit of antibodies attacking Megakaryocytes.

As I understand, Doptelet helps to keep Megakaryocytes living (despite attacking antibodies) besides stimulating for Platelets. I wonder if a combination of Doptelet and Promacta might help you achieve a more constant platelet count. That is, leverage Doptelet to keep the Megakaryocytes alive and leverage Promacta dose for stimulating the desired count of Platelets.

So with that, maybe half a tablet of Doptelet of day plus some small dose of Promacta a day would work. Maybe 25mg or so of Promacta. Then as counts rise or fall only lower or raise the dose of Promacta. Keep Doptelet the same to keep the Megakaryocytes alive.

What do you think?
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Doptelet dosing Qs 1 month 3 weeks ago #69135

  • mrsb04
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Hal please indicate your evidence base for As I understand, Doptelet helps to keep Megakaryocytes living (despite attacking antibodies)

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Doptelet dosing Qs 1 month 3 weeks ago #69136

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Thank you hal ,I took promacta for a year and it just stopped working . I'll run your idea past my doc , as of yesterday my platelets we're only three , so now I'm trying two pills one day then one , already I feel a bit better , I'm back on weekly visits , so will post any change .

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Doptelet dosing Qs 1 month 2 weeks ago #69161

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Been taking two and one since last count ,this week it was 78 , recheck in two weeks.

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Doptelet dosing Qs 1 month 2 weeks ago #69162

  • ecoclayton
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PemP1,
Good news. Hopefully you have found your new dosing??? Lets hope that you stay stable at your next check.

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Doptelet dosing Qs 1 month 6 days ago #69241

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Well it's been two weeks since my last check , took a pretty big jump to 220 k checking again in a week , having this many platelets sure feels good , so I enjoy while I can .

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Doptelet dosing Qs 1 month 6 days ago #69243

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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Hope your doctor is following the dosing protocols to ensure it doesn't go any higher
www.rxlist.com/doptelet-drug.htm#indications

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Doptelet dosing Qs 1 month 5 days ago #69245

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That is why I'm back to weekly visits .

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Doptelet dosing Qs 1 month 5 days ago #69246

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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I didn't see that you were back to weekly visits.

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Doptelet dosing Qs 1 month 7 hours ago #69271

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So today I was at 52k so that's ok , but these big ups and downs are tedious

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