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NPLATE JOURNEY 1 year 4 months ago #70551

  • GrouchoMarx
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Hello everyone,
I will start my experience with Nplate. I would like to share it for those that might need it.

I left Promacta/Revolade a month ago due to a lack of efficiency. For over 3 months my counts were around 25K on 75mg of Promacta.

However, I might still return to it. Why?

- Without Promacta my counts went down to 11K in 2 weeks. Obviously, 25K is better than 11K, Right?

- Since the approval of Nplate by the insurance took 6 weeks, and I was left with 28 days of Promacta medication at home. I decided to use it. And the surprise was, that my counts turned to 42K. Is it true also that I had 3 days of dex 6 weeks earlier when my level dropped to 11K.

- I read, that for some people, Promacta works with a small amount of pred. My doctor is open to consider 5mg of prednisone together with the 75mg of Promacta when the counts on Promacta fluctuate. I assume pred would be discontinued when we get closer to the target of 50k.

Being said so, I want to know what I can get from Nplate. It will help me decide what suits me better.

On 14th January I got my first injection with a dose of 80mcg when I was 30K.

On 21st January my level were 20K, so the injection that day had a dose increased to 160mcg.

Next Thursday I will know more.

The side effects so far, are almost none. Except for:

- a diarhea the day of the 2nd injection (with higher dose) but I am not sure what caused it.

- One kilo weight gain in 48 hours after the second injection. Something abnormal since I take care of my food and I actually run the day before (after a while). Will Nplate put weight on me? Let's see.

That's all for now

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NPLATE JOURNEY 1 year 3 months ago #70577

  • GrouchoMarx
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On 28th January my levels were 24K.
So the increase of Nplate to 160 mcg did nothing.
As a result a new increase was prescribed. I got an injection of 240 mcg. I couldn't sleep, had insomnia, some agitation and stomach problems. Too much on that dose. I am not willing to go that far. One more shot of 240mcg next week is all I want to do to finalise this experience. No more.

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NPLATE JOURNEY 1 year 3 months ago #70600

  • GrouchoMarx
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My Nplate journey ends today.
Another 24K today but with side effects. 1 kilo gain, insomnia and stomach problems.
Back to Revolade with 5mg Prednisone

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NPLATE JOURNEY 4 months 3 weeks ago #72029

  • mala_malina
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Thank you GrouchoMarx for sharing your Nplate journey. I'm very interested: did the combination of Revolade and Pred did it's job? 

My husband took Revolade 3 months, at first 50mg (1 month), then 75mg (2 months). But that did not prevent his counts from dropping to single digits as far as 1k. He got Ivig nearly every week. A few weeks ago when he was still on Revolade he got a 4 Days high-dose Dex pulse and his counts went up to 130k. Now he switched to Nplate because Revolade alone did nothing. But we are insecure because maybe he just needed to add some Pred to the Revolade and it would have worked.

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NPLATE JOURNEY 4 months 3 weeks ago #72030

  • GrouchoMarx
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I am glad my post helped.
After over 3 year with ITP and an extensive research I came down to 2 axiomas: we don't know enough of it and every person has a diferent path.

ITP is more severe for some. If without medication your platelets drops to nearly zero that's your starting point. While for other the basement is 40 or even higher.

ITP tend to fluctuate for many known and unknown reasons for everyone. A plus or minus 20, 30, 50 is always a possibility even with medication. 

Nplate was affecting me and it didn't do much apart from bothering me with an injection. For other is a miracle. 

Revolade/Promacta took months to work for me. I posted also here my journey. It just gave me a normal life with no side effects whatsoever. A miracle. I even needed to dose down after getting counts over 150K.

If for your husband prednisone works well. There is a chance that 2.5 mg to 5mg of it a day (apparently this dose is almost imperceptible) together with Revolade will do the trick. It might just give you an extra 10 to 20K on your count but that might just be enough to reach a more relaxed level.

Check with your doctor thou. 

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NPLATE JOURNEY 4 months 1 week ago #72067

  • sonyalea
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Thank you for speaking up about this. I went on N Plate last year after my platelets plummeted to 11k, and these treatments failed—Dex, Prednisone, Rituximab, and Revolade. Even IVIG is very difficult with migraines, and sometimes anaphylactic shock. My dose is about 3/4 of a 250 mcg vial, or about 180 mcg. This results in platelets between 100 - 250k. My insomnia is very challenging, and I'm losing several nights of sleep each week, along with joint pain, and of course, fatigue. I'm trying to see if I can reduce this dose to get to a platelet result of 60-100k with less side effects, but I also lead an active life, and don't want to put my body in peril from a fall. I'm considering splenectomy once the covid crisis here is over. I'm wondering if anyone has looked at dosage with N plate, and had success at decreasing side effects?
Sonya

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NPLATE JOURNEY 4 months 2 days ago #72099

  • sacapli
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Hello, in response to the N-plate comments I would just like to say, I have been taking the injections for about 3 yrs. When I started my journey with ITP, my platelets went as low as  "1"  then "3"  then "10"  I took the ivig infusions for awhile, my system would not tolerate promacta, and steroids did nothing.  I really tired of the infusions, due to time, 4 hrs and putting someone else out to chauffeur me.  So my doctor asked if I wanted to try Nplate.  It worked, and I have no side effects, my dosage goes from   .46 to .50 depending on where I'm at. This keeps my numbers between 130 and 220, although 2 weeks ago, they were 420, and last week 250!!  My only concern is, longterm, what does this do?  Am I compromising something else to save platelets, that won't be known until its too late?  They tell me no, but then how much kick back are they getting from that $4000 a week?  I haven't needed an injection for 2 weeks, so hopefully I can keep doing whatever it is I've been doing, and keep them up.  And YES the roller coaster is frustrating!!  Also just a little FYI I have found that Choline will bring the number up, all you need is 1/4 teaspoon. I take it with applesauce, it is very bitter. The powder form is more effective.  I get mine from Bulk Supplements.com  its 600mg  and a 3.5oz bag, it will last a very long time, shelf life is approx 18mo. to 2 yrs.  Choline has many benefits. Just dont take more than recommended, because it can cause diarrhea. Good Luck everyone!!! 

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NPLATE JOURNEY 4 months 2 days ago #72100

  • sacapli
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I would like to know if anyone has been taking Nplate injections for at least 8 to 10 years?  
Thank you

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NPLATE JOURNEY 4 months 23 hours ago #72102

  • GaryG1
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I have had ITP for over 40 years. I had a splenectomy in 1981 which did not cure my ITP. I have been able to live a normal life without a spleen and with counts that varied in the 15-75 range. I have tried and reacted negative to most all of the normal ITP treatments. Was on low dosage prednisone for many years and finally got off that a couple years ago. Been getting weekly NPlate injections for last two years that kept counts in the 40-100 range. Because I’m on Blood thinners from past Blood clot Heart attack I need to keep my counts above 100. I just started Avatrombopag (Doptelet) this week to try to get away from weekly injection trips 45 minutes away every week.  I will let you know how the this journey goes for me counts.

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NPLATE JOURNEY 3 months 3 weeks ago #72113

  • JJ
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Sacapli, I was on Nplate for three years and it pushed me into a partial remission with counts hanging around at about 80. It's quite common with Nplate so you may find the same. As for choline, be careful. It affects platelet aggregation which means it might cause blood clots and as we now know that ITP itself predisposes us to blood clots, we need to be extra careful about what supplements we take.
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NPLATE JOURNEY 3 months 3 weeks ago #72114

  • sonyalea
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I'm looking at what's recommended as a dose for NPlate, as well as the resulting platelet level, and at their website the instructions are within a much lower range than is possible with a full dose. Their titration guide mentions not dosing if over 200k platelets. Likewise, at drugs.com, the following advice "Nplate is not a cure for ITP and it will not make your platelet counts normal if you have this condition." I have been reducing my dose because of the extreme side effects of insomnia and joint pain, and finding it much more manageable.
Sonya

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NPLATE JOURNEY 3 months 3 weeks ago #72115

  • GaryG1
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Hi Sonyalea,

What  dosage of N Plate injection are you receiving and how frequent are you receiving them?
What range of counts are you able to maintain ?
Also was wondering how long you have been on N Plate treatment ?

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NPLATE JOURNEY 3 months 3 weeks ago #72116

  • sonyalea
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Hi Gary,
I maintain counts of 70k - 200k at a dose of about 2/3 of 250 mcg. I've been on NPlate for just over a year. Lifesaving for me, as five previous treatments failed.
Sonya

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NPLATE JOURNEY 3 months 3 weeks ago #72117

  • sonyalea
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Also weekly injections, which we do at home in Canada.
Sonya

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NPLATE JOURNEY 3 months 3 weeks ago #72118

  • GaryG1
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Never mind, sorry I didn’t see your post above. I would definitely hold off on the splenectomy. Give the N plate some more time and if not satisfied with results or side effects consider trying Avathrombopag.

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NPLATE JOURNEY 3 months 3 weeks ago #72119

  • GaryG1
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I have lived with ITP for 40 years  after having a splenectomy in 1981. You should see the scar I have from that type of surgery 40 years ago. I have been on N Plate for last two years and my counts always bounce around but never staying stable. Just switched to Doptelet two weeks ago.

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NPLATE JOURNEY 3 months 3 weeks ago #72120

  • sonyalea
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I hope that's going well, Gary. Thanks for sharing.
Sonya

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NPLATE JOURNEY 3 months 3 weeks ago #72129

  • JJ
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If you aren't doing so you need to measure Nplate in mcg per kg of body weight and keep a record of the amount given and the platelet count.You can then reduce it slowly level by level until the count is about 50 and the side effects are tolerable. Apologies if you are doing all this but your response of "about two thirds of a vial" wasn't very explicit.

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NPLATE JOURNEY 3 months 3 weeks ago #72131

  • sonyalea
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Yes I meant to not be explicit, as that feels too personal for this forum. I am following my doctor's recommendations. Thank you.
Sonya

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NPLATE JOURNEY 3 months 1 week ago #72151

  • mala_malina
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Do you all take Pred in addition to Nplate? 
My husband started with Pred 100 mg over a month ago, because his counts were very low (2000). At the same time he started receiving Nplate. The following weeks his counts finally went up to 178000. He tapered the Pred dose every week and Nplate was 4 mcg/kg weekly injection. But now as he is on 2,5 mg Pred and Nplate 4 mcg/kg his counts went down to 49000 again, so the doctors increased the Nplate Dose to 5 mcg/kg today and Pred to 10 mg. So I'm wondering if others need to take Pred in addition to Nplate for it to work.

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NPLATE JOURNEY 3 months 1 week ago #72152

  • sacapli
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In response to malina, no, I do not take anything in addition to Nplate. My counts generally stay up between 150 and 250.  Sometimes drop very low, (I blame it on stress and poor eating habits) and sometimes they soar to 400, this condition is so unpredictable, and frustrating!!  I have just decided to give it to the Lord, and do my part as much as I can.  But it does help to read about other people having the same issues, then you know, at least that your doctor is doing what every other doctor is doing.  As far as your doctor adding the Pred, I believe it just depends on the severity of the individual's condition.  Have a wonderful day!!! 

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NPLATE JOURNEY 3 months 1 week ago #72153

  • sonyalea
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I don't take anything in addition to N Plate. Prednisone causes psychological and other effects that are very difficult for my body, so I'm glad I don't have to.
Sonya

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NPLATE JOURNEY 3 months 1 week ago #72155

  • GaryG1
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Usually you take N Plate treatment to replace from having to take prednisone. I went off of prednisone after a daily dosage over 5-6 years and decided to try N Plate instead.

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NPLATE JOURNEY 3 months 1 week ago #72157

  • JJ
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I wouldn't take steroids with nplate. Your count of 49 was perfect for nplate. The aim is to maintain a count of around 50.

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NPLATE JOURNEY 3 months 1 week ago #72159

  • mrsb04
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I completely agree with  what JJ has said. Increasing the Pred dose  is very poor practice indeed. N plate dose can be increased up to 10mcg/kg if required. 

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