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Doptelet 1 year 2 months ago #69812

  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
  • Posts: 313
  • Thank you received: 38
Has anyone tried doptelet!? How long did it take to start working I had a stroke from a clot from too much ivig snd nplate in March then it turned into a brain bleed after the blood thinner was given my platelets are still being a psin I switched drs about a month ago because everytime I got low he would hit me with nplate, ivig, prednisone,iv steroids in platelets which caused my counts to go into the 800s which caused my stroke to begin with then he’d put me on aspirin snd I would drop dramatically in one week I would go from 7-800 to 3 snd then the cycle would start all
Over, I gained 35 pounds from the steroids I was depressed pretty much living in the drs office, I switched drs a month ago and I now get blood draws 2 times a week I started doptelet but I was already on a falling trend from my last dr so my new dr gave me ivig my counts got up to 408 so they had me hold the doptelet for about a week cause I was stable but then I started dropping again started taking doptelet on Thursday again so was taking it for 3 days straight but still dropped to 3 so I had to get ivig Hopi g it just hasn’t been consistent I want it to work so bad

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Doptelet 1 year 2 months ago #69826

  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 08
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I'm so sorry for what's happened to you.
I have not tried Doptelet, but I really hope it will work well for you.

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Doptelet 1 year 2 months ago #69842

  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
  • Posts: 313
  • Thank you received: 38
I started hsving seizures from the stroke apparently it happens from the scarring I recovering well o left my prior hemat who would not listen snd my counts were going from 800 to 3 on one week doptelet sees to hsve been working well for me but the headaches were excrushisting and seemed to make my seizures happen kore frequently

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Doptelet 10 months 1 week ago #70574

  • Ray
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I've had ITP for 6 or 7 years, tried Prednisone for 8 months, NPlate for a short time but discontinued because of numbness in my hands and feet combined with highly unpredictable elevated numbers... After that I refused any treatment for awhile. Eventually, my Doctor persuaded me to try Doptelet which I've been taking for about a year now. My range without meds was between 10 and 25 most of the time. Doplet brought me into the 50's at first - then about 150 after 3 months and then it kept going higher ... my last count was 358. So, that's great! Except I'm getting swelling and numbness in my hands and and feet again. I see where many people have had strokes from having their numbers jacked to high on meds. My concern is that my numbers will go to high someday between blood-tests. I want to cut the dosage but the Doctor wants to keep it. I felt much better at 125, had more energy, full use of my hands and feet, no discomfort, no headaches, bruises or bleeding. I'm 61, very active and fit... I feel like I'm 90 when my hands and feet are a constant struggle and reminder of ITP. Does anyone else get numbness or feel better at 125 than 350? I feel like it's time to self dose to get my numbers back to where I feel good.

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Doptelet 10 months 1 week ago #70575

  • 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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Ray
You know your body better then anyone else. I totally agree drop the dose and see what happens. Protocol is lowest dose possible to maintain a count above 50. I’d feel like I was living on a knife edge with a count of 350.
Your doctor isn’t listening to you, maybe time to start looking for a new one.
The following user(s) said Thank You: Ray

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Doptelet 10 months 1 week ago #70578

  • Ray
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Thx! I appreciate your comment. Sometimes we have to trust ourselves more than others.

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Doptelet 10 months 1 week ago #70579

  • 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
  • Posts: 1901
  • Karma: 7
  • Thank you received: 546
Ray
You're welcome. I spent most of my working life promoting self advocacy to my patients.
I'm afraid there are still doctors around who think they know best at all times.

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Doptelet 10 months 1 week ago #70581

  • ecoclayton
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  • Diagnosed with ITP 5/23/19
  • Posts: 69
  • Thank you received: 10
Ray,
I was on 20 mg Doptelet daily for 10 months and it worked great for my platelet levels. I stayed steady between 50 and 74, but my liver enzymes became elevated. I stopped the Doptelet 2 weeks ago and platelets dropped to 24. Still waiting on blood work results to see if liver enzymes are any better now.

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Doptelet 10 months 6 days ago #70589

  • jannihowell
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I am considering Doptelet. I have been having Nplate injections for the past 3 years. It's not working as effectively and was only needing a shot every 2-3 weeks, now I'm needing shots weekly.
I'm wondering how often you take Doptelet. Daily? Thanks for your response.

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Doptelet 10 months 6 days ago #70590

  • ecoclayton
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  • Diagnosed with ITP 5/23/19
  • Posts: 69
  • Thank you received: 10
janni,
I was taking 20mg one time a day (morning at breakfast). I am currently not taking it, but should know this week whether I can start again. My liver enzymes became elevated, although looking like it wasn't the Doptelet. My platelets went from 74 - 21 since stopping. Dr. talked to me about Nplate yesterday, but that once a week shot doesn't appeal to me.

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Doptelet 10 months 5 days ago #70596

  • Ray
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It's supposed to be taken everyday with food... But my levels came way up to 350. My Doctor wants me to continue at the full dose but I'm nervous about strokes so I'm backing off to every other day. I'll let him know on my next visit. I get a little abdominal pain, swelling of my hands and feet making boots and rings difficult to wear. Also, some numbness in my hands and feet but only when my platelets are above 100. I feel better with low platelets. I notice these side effects with-in a few hours of taking the medicine so I try to take it at night. I hope this helps. Good luck.

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