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NPlate

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15 years 2 weeks ago #336 by teach
NPlate was created by teach
I would like to hear from anyone who has taken or is taking NPlate. I had my first dose of it Monday. Any information welcomed.

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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15 years 8 hours ago #812 by Angel85
Replied by Angel85 on topic Re: NPlate
I am having my first dose of nplate today and i was just curious as to if anyone has had side-effects and when they have had the side effects if they have. What i mean by that is if you have had side-effects within say 24 hours or so of having it or if side-effects can occur at any time during the treatment? I am not too worried about the side-effects it mentions you may get, it is nothing i haven't had before, i am just curious when if any side-effects have occured.

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15 years 2 hours ago #820 by teach
Replied by teach on topic Re: NPlate
I have had four NPlate injections with very few slight side effects. The first week I had headache on the second and third days and a little nausea the second day. The second week I had headache the second day. Last week I had nothing. This week I have had a little nausea today, Thursday. I get my injections on Tuesdays. My count has gone 16,000, 31,000, 51,000, 73,000, 58,000. I am much happier than to be on prednisone.

Good luck to you.

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14 years 11 months ago #897 by Sophie
Replied by Sophie on topic Re:NPlate
I've just started Nplate (on 2/15) and I've had some bone and joint pain (nothing too severe, or lasting too long and mostly in the evenings) and a couple mild headaches. Tylenol and a heating pad have done the trick for me. I'm also still on a high prednisone, so I don't know what meds are causing which side effects.

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14 years 11 months ago #1122 by SamIAm
Replied by SamIAm on topic Re:NPlate
I began NPlate in December, and am still on it. I get headaches, and I have insomnia, but I've had trouble sleeping before so I'm not sure if that can be attributed to the NPlate. I've had mixed results, and will probably have my spleen removed in the next few months.

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14 years 11 months ago #1123 by SamIAm
Replied by SamIAm on topic Re:NPlate
I began NPlate in December, and am still on it. I get headaches, and I have insomnia, but I've had trouble sleeping before so I'm not sure if that can be attributed to the NPlate. I've had mixed results, and will probably have my spleen removed in the next few months.

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14 years 11 months ago #1199 by teach
Replied by teach on topic Re:NPlate
My platelets were 90,000 yesterday, taking NPlate. I have had headaches. I, too, have insomnia, but I already had it. I take Lunesta every night, but still have a lot of trouble sleeping.
I had a splenectomy about 25 years ago. It brought platelets up to around 125,000 where they stayed for years. Gradually my numbers fell and through the years I have been on prednisone many times for months at a time. The last few times on prednisone, my count didn't go up but into the 50,000-60,000 range. Without pred. my count was in the 12,000-25,000 range.
So far I am doing fine with NPlate.

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 11 months ago #1203 by Angel85
Replied by Angel85 on topic Re:NPlate
Thats good to hear that your doing fine with the Nplate. I am fairly certain i will be able to start it tomorrow. My platelets need to be under 30 and i am now down to 2 and a half mg of pred, and i have heaps of bruises, not huge ones, but unexplained ones and lots of petechiae especially in places on my body i know i only get them in when they are really low. I get headaches now anyway, only thing i would be concerned with is the insomnia, but i'll just have to see what happens.


Update: I just got my count back. It is low as i expected, they are back down to 9, so i am going in for the Nplate this arvo, instead of tomorrow, wish me luck everyone.

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 11 months ago #1223 by Angel85
Replied by Angel85 on topic Re:NPlate
How long does it take for the Nplate to start working?? As i mentioned in the previous post, my count today was 9, so i started the nplate today, but i am only on 2 and a half mg of pred, so i just want to know how long does it take for the nplate to kick in? Just so i have a rough idea of how long i need to be a bit more careful till they get back up to a resonable level?

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14 years 11 months ago #1224 by snowgoose
Replied by snowgoose on topic Re:NPlate
Hi Lauren,

Sorry to hear that your count has dropped, but glad to hear that you will be starting Nplate tomorrow. I hope you will respond quickly.

I have no experience of Nplate, but for me Eltrombopag takes at least a couple of weeks to kick in, about 8 weeks when I first started taking it.

All the best for tomorrow. Be strong!

Vanessa

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14 years 11 months ago #1243 by jules
Replied by jules on topic Re:NPlate
Nplate we have been told by our Dr. takes 5-7 days to see a result.

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14 years 11 months ago #1275 by teach
Replied by teach on topic Re:NPlate
My count has come up quickly on NPlate. I started at 16,000. After one week, count was 31,000, next week 53,000, etc. Last week count was 98,000, this week 90,000. This is much better than the last two rounds of pred did. This week I haven't had a headache, or any other side effect. I am happy.
I hope you get good results with it.

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 11 months ago #1779 by Angel85
Replied by Angel85 on topic Re:NPlate
Whooo Hoooooo, I am so excited, only my second week of the Nplate treatment and my count today is ..........69!!!!! I am so happy it is working. I had a double dose last week, so i think it was like something 160 (don't know if it is mgs or counted in something else though) so i did have quite a few side effects this week, probally most of them that are listed, but they are nowhere near as bad as the pred side effects, so it is worth it, i think for the results i am getting so far. I am trying not to be too hopefull cause it is stil in the early stages of the treatment, but so far so good.

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14 years 10 months ago #1994 by SamIAm
Replied by SamIAm on topic Re:NPlate
I've been on NPlate for 5 months now, and I thought I would drop some of my knowledge here, especially because my count is WAY down today and I'm considering trying Rituxan.
BEWARE of skipping doses! Last Wednesday was the second time my doctor skipped a dose of NPlate because my counts were extremely high (+/-800,000). And for the second time, my counts have dropped drastically about a week and a half after skipping the weekly dose. For some reason, there seems to be a delayed response. If your counts are super high and your doctor suggests skipping a dose, don't fall for it! Instead, suggest using a lower dosage than the one previously received.
NPlate is not a permanent fix. I'm sure everyone knows that, but I was so eager to begin the treatment that I wasn't really looking into the future. NPlate is a somewhat temporary holding off of the real problem, which is that your antibodies are acting a fool. Rituxan actually targets the antibodies that are targeting your platelets. In my opinion, it seems like a more sensible approach.

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14 years 10 months ago #1996 by ddunn
Replied by ddunn on topic Re:NPlate
can u tell me what the nplate treatment involves? is it shots? pills? IV?

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14 years 10 months ago #1997 by alisonp
Replied by alisonp on topic Re:NPlate
Its a weekly injection and works to make your bone marrow produce more platelets so that even so the same amount are being destroyed, you have more milling around in your blood. There is a daily tablet (promacta) that works on the same basis I think.

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14 years 10 months ago #1998 by ddunn
Replied by ddunn on topic Re:NPlate
ahhh thanks!!!!!!! Does it seem to be working for you??? How long do you have to take it?

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14 years 10 months ago #1999 by alisonp
Replied by alisonp on topic Re:NPlate
Denise,

I only know what I've read on this site. N-Plate is still not approved by NICE (too expensive I think) so I don't think they don't use it much in the UK. There are some trials of promacta I think, but again I don't know much. Its one of the drugs that my son's consultant has suggested as a possibility if he continued to have problems, but hopefully won't come to that (fingers crossed). Try looking back over previous posts on this site and try searching on the old site. Good luck with finding a second opinion today

Ali

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14 years 10 months ago #2000 by ddunn
Replied by ddunn on topic Re:NPlate
Thanks Ali!!! I am at work now, but when i get home, I am going to stay up until the Dr. office opens, and call. I hope they will see me soon, and not make me wait too long, because i am sure when i tell that other doctor i am not doing the Rituxan yet, and am seeking a 2nd opinion, she probably wont be happy....but i have to be comfortable with what i am doing and atleast informed, and right now, I am neither......

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14 years 10 months ago #2012 by tacmom
Replied by tacmom on topic Re:NPlate
I wasn't going to comment, but I feel like I should because my daughter was on the study drug for 2 years. Since this drug is still kind of new, Amgen has a strict protocol of when to increase/decrease the drug, or when it skip/stop the drug. It is there for a reason...if your count were to remain high (>400K)for more than a few weeks, then you could have more complications with high counts than you would with low counts.

Caitlin skipped the drug twice while she was on the trial. The first time was because she was in between phases and they actually want to make sure the "drop" happens. The 2nd time was because we were travelling and they didn't have a hospital that gave these shots where we were going. The first time, she was in the ER due to bleeding symptoms and put right back on the drug the next day. The 2nd time, I didn't even notice the symptoms and she dropped from 110K to 10K after only missing one time. That was to be expected and it was easily resolved by going back on the drug.

Caitlin is off the drug now, but when she came off this time for good, they put her on a high dose of Prednisone to avoid the "crash". It really worked for her. I just wanted to comment because I didn't want misinformation going around. You should be well-informed when taking this drug and if you are not, there is a website that even tells you the dosing chart. ( www.nplate.com ) Caitlin's hematologist followed it to a "T" and I was thankful because I knew exactly what to expect at all times when it came to how much she was getting.

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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14 years 10 months ago #2045 by ddunn
Replied by ddunn on topic Re:NPlate
Is Nplate an injection? How often do you have to have it?

I go back to doc tomorrow to discuss different options, as I am not crazy about the rituxan one.....and cancelled it. I am also going to go for a second opinion.

Counts were at 71,000 friday, and I am on 70 mg of prednisone, diagnosed 2/24.

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14 years 10 months ago #2118 by teach
Replied by teach on topic Re:NPlate
NPlate is an injection that is to be given weekly. If platelet count is 50,000 or under, the dosage is increased...a count of 51,000 or over means the dosage remains the same. Last week my count was 158,000...the first time over 100,000 in many years even taking pred. Today count was 123,000. I suppose my system has adjusted to it now because I don't have nausea or headaches. My count was steadily going up each week on the first dosage, from 16,000 to 98,000. Then week before last it dropped to 34,000. Dosage was increased, now count is great.
I am sorry anyone has to take pred. I have had lots of it, but sure do not like it. Since I have had ITP for so long, I had gotten to where it didn't work for me. So far, NPlate is doing fine.
Let us know what was decided today.

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 10 months ago #2139 by Angel85
Replied by Angel85 on topic Re:NPlate
Sorry you had nausea, but good to know someone else has, because last friday was my 3rd injection and i have had nausea every injection, and this week it was so bad, i was vomiting as well and ended up in hospital overnight. The Dr did seem a bit concerned it could be a reaction or a bad side-effect, but he seemed to think it was just a viral gastro bug. I am supposed to have another injection on friday this week. My platelet count last friday was 69 and yesterday in the ED, it was 38, so i have another count done on friday and we will see what they are, and how i am feeling and go from there.

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14 years 10 months ago #2228 by teach
Replied by teach on topic Re:NPlate
I am sorry you were so sick. I hope it was just a bug and not the NPlate. Also hope you get better results Friday.

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