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TOPIC: New ITP drug???

New ITP drug??? 1 year 1 month ago #66910

  • Carcamoc10
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Is anyone familiar with Doptelet (avatrombopag) ? I saw it was just approved for chronic ITP but I have yet to hear about it...thoughts anyone?

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New ITP drug??? 1 year 1 month ago #66913

  • 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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New ITP drug??? 1 year 1 month ago #66914

  • MelA
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If you get the PDSA e-News it came in my email overnight and there is an article in there about it
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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New ITP drug??? 1 year 1 month ago #66918

  • Carcamoc10
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Mrsb04 thanks for the article, it was a lot more detailed than the one they had in the news section of the home page!! It sounds promising, I think...I’ll have to bring it up to my hemo next appointment!!

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New ITP drug??? 1 year 2 weeks ago #67064

  • ccurley
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I just received my first months supply. I wont start until August 1st. Excited to try. I am on Tavallese daily and Nplate once a week. Will stop Nplate and start Doptelet.
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New ITP drug??? 1 year 2 weeks ago #67065

  • Carcamoc10
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Ccurley, be sure to let us know how it goes!! & just out of curiosity: What do the Tavalisse and NPlate keep your platelets at, usually?

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New ITP drug??? 1 year 2 weeks ago #67070

  • ccurley
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Between 14 and 49 (49 highest and only once in a year or so). Dr said I will stop Nplate when I start Doptelet works on same receptors? I want to stop Tavallese though, diarrhea side effects for over a year, annoying.

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New ITP drug??? 1 year 2 weeks ago #67080

  • poseymint
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Thanks Ccurley for sharing your information about this new drug. It seems similar to Promacta but can be taken with food and doesn't have the risk of liver toxicity so they are marketing it to patients with chronic liver disease that also have low platelets. And to ITP patients. Good to have more choices! The cost is a bit shocking- I am seeing it costs nearly $10,000. for 10 pills- whoa. The only good thing about that is that my hematologist had been irritated in the past that I am on the expensive drug Nplate without having a failed splenectomy first. These new drugs like Tavlisse and Avatrombopag are great in that they make Nplate look cheap. Anyway, hope it works for you!

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New ITP drug??? 1 year 2 weeks ago #67081

  • 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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My understanding is that Doptelet is licensed for patients with chronic liver disease who have ITP and need a platelet increase pre surgery and for short term use only

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New ITP drug??? 1 year 1 week ago #67131

  • ccurley
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New ITP drug??? 1 year 1 week ago #67132

  • ccurley
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Poseymint, hello I was on the study for Eltrombopag/Promacta in Baltimore back in early 2000s and it worked. I was then put on Promacta and unfortunately I turned yellow and numbers went thru the roof. I stopped and back to normal, so I am excited about this Avatrombopag and no risk of liver toxicity, we shall see. I had a $70 co pay and just received a call and a phone number to call pharmaceutical company regarding the copay, calling them today. My hematologist will bring up spleenectomy every now and again and I am not interested. When I was about 12 years old the doctor then suggested and my Mom said no. So 50 years later and it's still no :) As I am older now I certainly don't want to compromise my immune system and only 50% chance it will work.
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New ITP drug??? 11 months 1 day ago #67458

  • ccurley
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Hello! Still taking Avatrombopag or Doptelet. I started with one 20mg a day and ended Nplate. After 2 weeks my platelets dropped to 22 from 33. So I increased to 40mg a day. It has been 3 weeks and platelets slowly increased to 39 and all other blood work is normal. Going to every 2 weeks for blood work, hallelujah. If I remain steady or increase hopefully will be able to go down to one Tavalisse a day and perhaps get rid of them altogether. So that's the story so far. Will post in a few weeks after I see how labs play out. Take care.

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New ITP drug??? 11 months 1 day ago #67459

  • Carcamoc10
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Ccurley I’m glad things are going well, thank you for the update :)

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New ITP drug??? 3 months 1 week ago #68991

  • ccurley
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Just fyi. I had to stop taking the doptelet. I became anemic and it was a few months before I felt normal again.

Charlene

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New ITP drug??? 3 months 5 days ago #68999

  • MelA
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Sorry Charlene - hope your platelets are ok!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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New ITP drug??? 3 months 4 days ago #69002

  • 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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That's a shame Charlene.
Was the cause of your anaemia investigated or just attributed to Avatrombopag?

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New ITP drug??? 2 months 4 weeks ago #69068

  • ccurley
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thanks back to my norm, in the 20s, 30s

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New ITP drug??? 2 months 4 weeks ago #69069

  • ccurley
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I did get a bone marrow biopsy. It was odd. Some fibrosis. The Nplate and the Doptelet together seems to definitely be a cause. My blood work is "almost" back to normal as far as anemia, it took a few months. Also had a genetic blood workup and it showed nothing odd. I have some other blood counts that are off in my WBC differential hoping they gradually go back to normal. Back on 1000mg Nplate weekly and 200 Tavallise nightly.

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New ITP drug??? 2 months 4 weeks ago #69078

  • 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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Charlene
Why are you only taking Fostamtinib (Tavalisse) at night? Its 'mean absolute bioavailability of R406 is 55% with high variability (30% to 85%)' and is a twice daily drug with a half life of less than 24 hours.

'Geometric mean half-life of fostamatinib was assessed in single dose studies in healthy human subjects and ranged from 14.2 to 15.5 hours for 150 mg under fasted conditions. Half-life at steady state was investigated in study D4300-007. Half lives were similar for all cohorts (white, Japanese; 50, 100 or 200 fostamatinib bid) and ranged from approximately 12 to 17 hours'.

Citations are taken from www.ema.europa.eu/en/documents/assessment-report/tavlesse-epar-public-assessment-report_en.pdf
I don't know if you will be able to access this document or not in the US. If you cannot and are interested PM with your email address & I'll download it and send it to you.
Anne

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New ITP drug??? 2 months 4 weeks ago #69082

  • ccurley
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I am introducing Tavalisse back into my treatment routine. It gives me chronic diarrhea and I stopped January 1st, then I stopped the Doptelet a few weeks after about a week before the bone marrow biopsy and started only NPlate once again. I introduced Tavallisse back a few weeks ago and within a week, the same. Stopped for 2 weeks again and started one evening pill (100mg) for about 2 weeks, did labs (counts were up) and just started 3 days ago 2 pills (200mg). Side effects are better at the moment taking in the evening while also taking Loperamide once or twice a day as well (this may be my saving grace to go back to proper dosing).
I have had ITP since I was 10. My Hemo is at Johns Hopkins and I have been treated at Hopkins since 1966. I have been a volunteer for most of the new trials out there.
Not much luck on 2 of the trials:
Eltrombopag put me into liver failure.
Avatrombopag (which I was excited about because it was showing no liver toxicity) led to my the worst side effect yet. It looks like fibrosis of the bone marrow is a result of TPO-RA drugs which Romiplostin/Eltrombopage/Avatrombopag are. I am finally feeling almost "normal" again and it has been over 3 months since I stopped the Avatrombopag.
I have tolerated NPlate (romiplostin) for a about 6 years. I hope to get up to "normal" dosing of Tavallise and fingers crossed up to 150mg twice a day. I will see what I can tolerate. Treatment for everyone, as I'm sure you know is different and what works for one person may or may not work for another.
Dr. wants to eliminate the TPO-RA drugs all together so hopefully working toward that, we shall see. I don't usually bleed (knock wood) or have petechiae or much bruising anymore for the last, I'd say 3 or 4 years. My counts are as I said above between 20 and 30 and always have been for the past 10-12 years. Adding the evening pill of Tavallise brought my counts up. I will do blood work next week and see where I am. I discuss all of my changes with the hematologist, we email and talk every week. I also talk to Rigel Nurses (drug manufacturer of Tavallisse) monthly who know what I am doing and why.

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New ITP drug??? 2 months 4 weeks ago #69089

  • 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.
  • Posts: 1567
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I hope it works for you.
I was on the UK the double blind trial for Fostamatinib. It did nothing for the first 12 weeks so it was assumed I was on the placebo and transferred to the open label arm of the trial. It did absolutely nothing for the next 24 weeks despite being on the maximum dose so I was kicked off the trial as a none responder. I had absolutely no side effects from it however

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New ITP drug??? 2 months 3 weeks ago #69129

  • Hal9000
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ccurley,
There is another destruction pathway blocking drug that, as I understand, works similar to Tavalisse but has far fewer side effects / adverse events. I heard about it while I was at the PDSA conference this past summer. It is called 'PRN1008'. It blocks the 'BTK' pathway instead of the 'SYK' pathway. It is not FDA approved yet but there is a clinical trial going on. Here is the link. Perhaps one of the listed locations is near you.
clinicaltrials.gov/ct2/show/NCT03395210

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