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Doptelet dosing Qs 1 year 5 months ago #69274

  • 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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I agree PemP1 that is why I gave up on Romiplostim, counts could be anywhere between 6 and >200.

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Doptelet dosing Qs 1 year 5 months ago #69337

  • PemP1
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So it has been two weeks since last check , now down to 2k , bruising ,spotting all back but looking a little better today continuing on with two and one of the doptelet , and so it goes , platelets will probably go higher for a few weeks until it turns around again .

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Doptelet dosing Qs 1 year 5 months ago #69347

  • Hal9000
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Hal please indicate your evidence base for As I understand, Doptelet helps to keep Megakaryocytes living (despite attacking antibodies)

I got that at the PDSA conference last year (2019). Although I went back and looked through conference videos and couldn't find the exact sentence, I picked it up while there. LOL, or I dreamed it. On a side note. Not everything at the conference is necessarily in the videos that can be bought from PDSA after it is over. For example, essentially all the presentations are in them, but group meetings are not.
My exact recollection is that Doptelet is better at keeping Megakaryocytes alive then either Nplate or Promacta. But there was no mention of the exact ranking between the three drugs. Based on how Nplate physically stimulates, how Promacta stimulates, and how Doptelet stimulates. My guess is that Nplate is the worst of the three. It is the most different.

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Doptelet dosing Qs 1 year 5 months ago #69349

  • 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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Hal
I think you dreamt it. I have spent hours reading research papers and can find no proof at all.

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Doptelet dosing Qs 1 year 4 months ago #69398

  • ecoclayton
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Quick update on Doptelet. Blood work was done today and platelets at 63 up from 59 one month ago. Dr. was happy and so was I. Going to 2 month appts. Seems like this drug is working for me without any side effects. Hope you all are doing well!

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Doptelet dosing Qs 1 year 4 months ago #69406

  • PemP1
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Great Clayton seems like you're staying steady . I had a check yesterday , I went from 2 to 9 , I'm having huge swings , so I'm thinking of dropping it , when I finish this batch . I'll go without and hit the prednisone when I start to bruise.
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Doptelet dosing Qs 1 year 4 months ago #69407

  • ecoclayton
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Thanks PemP1. I would agree with you that it is time for you to take a different approach. I feel really fortunate to have found something that seems to be working for now. Hopefully you find something that works, other than prednisone, soon.

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Doptelet dosing Qs 1 year 4 months ago #69420

  • PemP1
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Thank you Clayton for your post , before I totally go to the dark side , I'm going to do their maximum dose of 40mg a day , I get checked again in two weeks , stay well .

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Doptelet dosing Qs 1 year 4 months ago #69452

  • Hal9000
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Hal please indicate your evidence base for As I understand, Doptelet helps to keep Megakaryocytes living (despite attacking antibodies)

mrsb04, congratulations, and cheers to no more Prednisone!
I sent a couple emails with evidence suggesting all TPO-RAs help keep Megakaryocytes alive from an attacking immune system. Further, that Doptelet *might* be statistically better than either Promacta or Nplate at this. Hopefully, you find it compelling evidence. Because of copyright, I have not posted the info here.

To reiterate an earlier post. I wonder if a combination of Doptelet and Promacta could ease the wild swings PemP1 and Lizabeth1 (thread starter) have both experienced. Doptelet to keep megakaryocytes alive and a bit of Promacta to fine tune to a desired count value, such as 50. A variety of dose options are available with Promacta.

Regardless, there is likely another solution. A solution that others (this PDSA forum and 2019 PDSA conference) have already reaped the benefit of. That would be high dose Promacta. Promacta in the 100 to 150 mg range. For this, it appears that one might have to hook up with a hematologist with a background in treating difficult ITP cases. This may not be practical because of area availability. A person at the PDSA conference mentioned to me that 'medically necessary' needs to be in the documentation to get a Promacta prescription higher than the normal 75 mg upper limit approved by insurance.

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Doptelet dosing Qs 1 year 4 months ago #69517

  • PemP1
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So checked today after taking 40mg for two weeks and count was seven . So I'm done with doptelet . My doc wanted to go on nplate . Think I want to clean my system out first . Any suggestions would be appreciated thanks .

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Doptelet dosing Qs 1 year 4 months ago #69518

  • 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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PemP1
What a rough ride you are having. I think if I were you I too would want to give my system a rest.
I know you have tried all 3 TPORAs and Fostamatinib. Have you tried anything else apart from them and prednisolone?

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Doptelet dosing Qs 1 year 4 months ago #69519

  • PemP1
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Had my spleen removed , never really got to try rituxin , spent a day being infused , promptly put me in the hospital for a couple of days .

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Doptelet dosing Qs 1 year 4 months ago #69520

  • 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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Shot in the dark here PemP but have you been checked out to make sure you have not got an accessory spleen?

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Doptelet dosing Qs 1 year 4 months ago #69521

  • PemP1
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Thanks for the tip mrsb04 ,I did have an enlarged spleen plus extra veins , so something could have got left behind , can it be checked with a blood Test , I'll text my doctor Monday . Again thanks .
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Doptelet dosing Qs 1 year 4 months ago #69524

  • 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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PemP
I just came across this, looks like you would need a scan ..www.statpearls.com/kb/viewarticle/17061

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Doptelet dosing Qs 1 year 4 months ago #69590

  • Hal9000
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PemP1, I am totally stunned that you did not respond to 40mg of Doptelet. Really stunned. Off hand, the only thing that comes to mind why it would not work is bone scarring, aka fibrosis.

There is also PRN1008 which a new drug and supposedly has fewer symptoms than Tavalisse. But is only available in clinical trial.
clinicaltrials.gov/ct2/show/NCT03395210

Not sure exactly how Rituxan was a problem for you but I would note that those here on PDSA that have responded to Rituxan have also responded to Cyclophosphamide, aka Cytoxan. Recall that it is normally a chemotherapy drug.

There is also Dapsone and Danazol. Both can potentially work for long periods of time if you can get by their mostly mild side effects. Between the two, Dapsone can have fewer side effects, as I understand. I took low dose Danazol for a year and half. Only stopped because I was hoping it might lead to remission - and it was not doing that. AFAIK, Dapsone never leads to remission.

Hope this helps.

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Doptelet dosing Qs 1 year 4 months ago #69591

  • PemP1
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Thank you Hal9000 another glimmer of hope , my doctor is scheduling MRI for me to see if any of my spleen was left behind , I was thinking of trying rituxan again but this time I'll stay close to the hospital in case I get another reaction , there is a guy in New Zealand who has the exact same results I have . I'll show my doctor your post , I need to help her out I think she's close to giving up , maybe also try that clinical test , you can probably tell I'm back in the prednisone again .thanks again.

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Doptelet dosing Qs 1 year 4 months ago #69621

  • Hal9000
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PemP1, if Sandi was here, she'd probably tell you of the possible extreme risks associated with Rituxan - especially if one has already had a previous bad reaction. Here is something on the subject.
"Identifying Hypersensitive Reactions To Rituxan"
pdsa.org/discussion-group/7-treatment-general/29710-identifying-hypersensitive-reactions-to-rituxan.html#59609

A lot of folks can get through Rituxan treatments using a 'desensitization' technique. Here is some info on it.
"Rituxan desensitization"
pdsa.org/discussion-group/7-treatment-general/29990-rituxan-desensitization.html?start=0#62782

"Rituximab (Rituxan) desensitization protocol"
hemonc.org/wiki/Rituximab_(Rituxan)_desensitization_protocol

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Doptelet dosing Qs 1 year 4 months ago #69625

  • PemP1
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Thanks hal9000 , but I made a mistake it was winroe I had the allergic reaction to , it was a long time ago , as far as getting off the doptelet it's a tough one bruised and all over , I'm on a lot prednisone
So will keep this short , I will check in later after I've tapered down . Take care .

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Doptelet dosing Qs 1 year 4 months ago #69626

  • MelA
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PemP - what was your reaction to WinRho? I had it 18 years ago, 1 IV, and have had decent numbers since [up & down but decent numbers].
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Doptelet dosing Qs 1 year 4 months ago #69627

  • PemP1
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I should have never left the infusion place , by the time I got home ,we had to call an ambulance , I was doubled up in fetal shape , surging shakes and pains . I was in hospital for five days , I'll never forget it . Promacta came after that , I think it was new ,, worked well for a year then quit .
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Doptelet dosing Qs 1 year 3 months ago #69649

  • PemP1
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So this Thursday ,I am going back to n plate injections , getting off of the doptelet has been rough ,black and blue all over . I have managed to lose a lot of weight ,so that might make life with n plate a little easier , I never did get any high numbers with it , but managed to exist some what normally . Thanks for all the good will .

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Doptelet dosing Qs 10 months 1 week ago #70564

  • jannihowell
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Hello, I'm new here.
Just a few questions.
How much Nplate were you getting and how often.
I've been getting an Nplate shot every 2-3 weeks and now my counts are dropping to the teens at the 1 and a half weeks. So it's not as affective as it has been. Doctor wants me to start weekly shots of the 1/4 dose.
I'm thinking of trying the doptelet.
Just a little hesitant, as when I started the Nplate for surgery, they gave me a full dose. Platelets went too high and had a heart attack at age 52. Just a little nervous!!!!!!

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Doptelet dosing Qs 10 months 1 week ago #70566

  • 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'm also 52 and also always wary of my platelets shooting up too high. I just started Doptelet 4 days ago. I can't tell you much so far other than it was a hassle to get my health insurance company to approve it. I was on Promacta previously and my levels wouldn't stabilize after taking it for almost a year. My hematologist has started me on 20mg Doptelet per day, so I'll keep you posted. Both Promacta and Doptelet are ridiculously expensive, so make sure you sign up for the manufacturer's co-pay programs if you get either.

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