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Doptelet dosing Qs

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 6 months ago #68784 by Hal9000
Replied by Hal9000 on topic Doptelet dosing Qs
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?
ITP Types and Treatments by HAL
  • ecoclayton
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  • Diagnosed with ITP 5/23/19
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5 years 6 months ago #68854 by ecoclayton
Replied by ecoclayton on topic Doptelet dosing Qs
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.
  • mrsb04
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  • ITP since 2014. Retired nurse. 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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5 years 6 months ago #68858 by mrsb04
Replied by mrsb04 on topic Doptelet dosing Qs
Good news ecoclayton
The following user(s) said Thank You: ecoclayton
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5 years 6 months ago #68867 by MelA
Replied by MelA on topic Doptelet dosing Qs
Happy for you ecoclayton!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: ecoclayton
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5 years 6 months ago #68890 by PemP1
Replied by PemP1 on topic Doptelet dosing Qs
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
The following user(s) said Thank You: ecoclayton
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5 years 5 months ago #68960 by PemP1
Replied by PemP1 on topic Doptelet dosing Qs
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.
  • ecoclayton
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  • Diagnosed with ITP 5/23/19
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5 years 5 months ago #68971 by ecoclayton
Replied by ecoclayton on topic Doptelet dosing Qs
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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5 years 5 months ago #68973 by PemP1
Replied by PemP1 on topic Doptelet dosing Qs
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 .
  • ecoclayton
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  • Diagnosed with ITP 5/23/19
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5 years 5 months ago #69013 by ecoclayton
Replied by ecoclayton on topic Doptelet dosing Qs
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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5 years 5 months ago #69020 by MelA
Replied by MelA on topic Doptelet dosing Qs
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
  • ecoclayton
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  • Diagnosed with ITP 5/23/19
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5 years 5 months ago #69023 by ecoclayton
Replied by ecoclayton on topic Doptelet dosing Qs
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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5 years 5 months ago #69025 by poseymint
Replied by poseymint on topic Doptelet dosing Qs
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.
The following user(s) said Thank You: ecoclayton
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5 years 5 months ago #69037 by MelA
Replied by MelA on topic Doptelet dosing Qs
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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5 years 5 months ago #69039 by PemP1
Replied by PemP1 on topic Doptelet dosing Qs
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 .
  • mrsb04
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  • ITP since 2014. Retired nurse. 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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5 years 5 months ago - 5 years 5 months ago #69040 by mrsb04
Replied by mrsb04 on topic Doptelet dosing Qs
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
.
  • ecoclayton
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  • Diagnosed with ITP 5/23/19
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5 years 5 months ago #69050 by ecoclayton
Replied by ecoclayton on topic Doptelet dosing Qs
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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5 years 5 months ago #69055 by PemP1
Replied by PemP1 on topic Doptelet dosing Qs
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
  • mrsb04
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  • ITP since 2014. Retired nurse. 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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5 years 5 months ago - 5 years 5 months ago #69058 by mrsb04
Replied by mrsb04 on topic Doptelet dosing Qs
PemP1
30mg of what Prednisolone or Avatrombopag?
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5 years 5 months ago #69061 by PemP1
Replied by PemP1 on topic Doptelet dosing Qs
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
  • mrsb04
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  • ITP since 2014. Retired nurse. 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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5 years 5 months ago #69065 by mrsb04
Replied by mrsb04 on topic Doptelet dosing Qs
A one off dose of Prednisolone?
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 4 months ago #69128 by Hal9000
Replied by Hal9000 on topic Doptelet dosing Qs
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?
ITP Types and Treatments by HAL
The following user(s) said Thank You: PemP1
  • mrsb04
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  • ITP since 2014. Retired nurse. 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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5 years 4 months ago #69135 by mrsb04
Replied by mrsb04 on topic Doptelet dosing Qs
Hal please indicate your evidence base for As I understand, Doptelet helps to keep Megakaryocytes living (despite attacking antibodies)
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5 years 4 months ago #69136 by PemP1
Replied by PemP1 on topic Doptelet dosing Qs
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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5 years 4 months ago #69161 by PemP1
Replied by PemP1 on topic Doptelet dosing Qs
Been taking two and one since last count ,this week it was 78 , recheck in two weeks.
  • ecoclayton
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  • Diagnosed with ITP 5/23/19
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5 years 4 months ago #69162 by ecoclayton
Replied by ecoclayton on topic Doptelet dosing Qs
PemP1,
Good news. Hopefully you have found your new dosing??? Lets hope that you stay stable at your next check.
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5 years 4 months ago #69241 by PemP1
Replied by PemP1 on topic Doptelet dosing Qs
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 .
  • mrsb04
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  • ITP since 2014. Retired nurse. 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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5 years 4 months ago #69243 by mrsb04
Replied by mrsb04 on topic Doptelet dosing Qs
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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5 years 4 months ago #69245 by PemP1
Replied by PemP1 on topic Doptelet dosing Qs
That is why I'm back to weekly visits .
  • mrsb04
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  • ITP since 2014. Retired nurse. 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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5 years 4 months ago #69246 by mrsb04
Replied by mrsb04 on topic Doptelet dosing Qs
I didn't see that you were back to weekly visits.
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5 years 4 months ago #69271 by PemP1
Replied by PemP1 on topic Doptelet dosing Qs
So today I was at 52k so that's ok , but these big ups and downs are tedious
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