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NPLATE

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14 years 6 months ago - 14 years 6 months ago #18828 by brittany
NPLATE was created by brittany
rituxan treatments did not work. my count yesterday was 22. hemo wants to try Nplate....peoples experiences with this??? Also sick of nothing working (steroids, ivig, rituxan...)
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14 years 6 months ago #18829 by Ann
Replied by Ann on topic NPLATE
Nplate works for me. There's a few threads about it around, have a hunt around and see if they give you any information you are after.

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14 years 6 months ago #18830 by eklein
Replied by eklein on topic NPLATE
We've had a lot of stories here from people who nothing worked for and then nPlate worked - it was exciting to see a new breakthrough in medicine happening to people you 'knew'!
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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14 years 6 months ago #18843 by server
Replied by server on topic Re: NPLATE
NPlate worked great for me. But as you've heard, everyone is different! It did great for my numbers, but I couldn't handle the side effects. Terrible muscle, joint and bone pain. I suppose if nothing else worked I'd try it again, but for now the Promacta is working.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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14 years 6 months ago #18871 by tgurin12
Replied by tgurin12 on topic Re: NPLATE
I've been on it for about five weeks now. My platelets have increased every week except the last week when my wisdom tooth was pulled and I had a great deal of bleeding. The first couple of weeks I had some trouble sleeping, besides that I haven't noticed any side effects.

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14 years 6 months ago #19031 by ladytee06
Replied by ladytee06 on topic Re: NPLATE
Hi, this is directed at all those who are using Romiplostim(nplate).
I have just started on this and was wondering how quickly those of you using it have seen an increase in your platelet count? I have chronic refractory itp (26 years with a count of anywhere between 1 and 7 for the last fifteen years) and the only thing that works is ivig which is my 'emergency' treatment.
Look forward to your replies/comments.

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14 years 6 months ago #19033 by Ann
Replied by Ann on topic Re: NPLATE
I saw an increase in counts the first week of using Nplate but the second week I was back down below 5. With an increase of dose the same thing happened and so it went up and down increasing the dose until I got to the 5th dose and then suddenly my count went really high and I've had to drop the dose back down to the minimum again. And here I am today with a count of around 75 to 100 most weeks.
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14 years 6 months ago #19034 by ladytee06
Replied by ladytee06 on topic Re: NPLATE
Thanks for that Ann.
I've only had two 'jabs'......after the first my count went from 5 to 11 then my dose was increased for the second but unfortunately remained at 11. At least from what you're saying it makes me more optimistic that my count may increase over the coming weeks.

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14 years 6 months ago - 14 years 6 months ago #19143 by Tad Moody
Replied by Tad Moody on topic Re: NPLATE
Brittany-

It took 6 weeks before Nplate started working for me. Been on if for well over a year. Some side effects at first, but are lessening. Hopefully, it will work for you, but be sure to give it time! Good luck, keep us updated.

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14 years 6 months ago #19164 by tgurin12
Replied by tgurin12 on topic Re: NPLATE
Week 1 (when first received)-6k
Week 2-11K
Week 3-250K
Week 4-73K (after penicillin for infection in tooth)
Week 5-53K (after Wisdom tooth pulled)
Week 6-55K
Week 7-93K
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14 years 6 months ago #19169 by ladytee06
Replied by ladytee06 on topic Re: NPLATE
Thanks for posting that info showing counts on a weekly basis. I will have bloods done later this morning and will then have results this afternoon. I am hoping that there is an improvement as the bruises all over my arms seem as though they are being 'mopped' up in the last couple of days!! Will post again once I've had blood count results.


Off topic.....how do I say 'thank you' as most do at the bottom of their messages???

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14 years 6 months ago #19171 by Ann
Replied by Ann on topic Re: NPLATE
The thank you is actually a button to hit to thank the person and not on the post you're reading itself.
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14 years 6 months ago #19172 by ladytee06
Replied by ladytee06 on topic Re: NPLATE
Thanks Ann...just realized.....feel a right numpty now!!
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14 years 6 months ago #19174 by Rhiannon
Replied by Rhiannon on topic Re: NPLATE
and i haven't noticed it till you just said so you not alone in not knowing. but now I know

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14 years 6 months ago #19175 by ladytee06
Replied by ladytee06 on topic Re: NPLATE
Just had blood results.......still eleven!

23/9/11 Starting count = 5
30/9/11 6
7/10/11 11
14/10/11 11

Maybe an increase next week.......fingers crossed :)

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14 years 6 months ago #19176 by jpb
Replied by jpb on topic Re: NPLATE
keeps my count above 100 and it took about 5 weeks to really start working and even then a few ups and downs along the way but thankfully usually over 100
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14 years 6 months ago #19187 by tlmons
Replied by tlmons on topic Re: NPLATE
Thanks jpb for your info. I don't get on alot and was wondering how you were doing. Its good to hear that things are going better for you. :)

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14 years 6 months ago - 14 years 5 months ago #19335 by ladytee06
Replied by ladytee06 on topic Re: NPLATE
Had this week's blood results earlier......plt = 14!

so: 14/10/11 = 11

21/10/11 = 14 after fourth 'jab' of Romiplostim/Nplate which is being increased each week if no exceptional increase in count.

Wonder what it'll be next week? Fingers crossed yet again!
At least for a change I'm relatively bruise free :woohoo: despite my plt count not increasing by much........haven't been relatively bruise free for at least fifteen years!
Also, not waking up every morning with my mouth full of blood is quite nice too!!

Question to those who are on Nplate/Romiplostim is it ok to drink wine as I haven't been told any different?

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14 years 5 months ago #19348 by Ann
Replied by Ann on topic Re: NPLATE
Wine is fine with romiplostim. There are no food or drink restrictions at all so enjoy.

Fingers cross for a higher count next week.
The following user(s) said Thank You: ladytee06

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14 years 5 months ago #19460 by Christine
Replied by Christine on topic Re: NPLATE
This is not really a reply but a question re nplate.
I have been getting weekly doses for about 9 weeks and the count went up daramtically the first week from 7 to 400,00!
It has now stabilised at around 20 - 50 My doc wants to give me a stronger dose - I am on 250 mg. I am quite happy with my counts being 20-50. I have had ITP for over thirty years so am quite excited at the 20-50 count. I have had no side effects from nplate and love it as it gives me freedom from the 5hr IVIG weekly treatments.I am not sure about increasing the dose. Any comments please? Thanks everyone. :)

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14 years 5 months ago - 14 years 5 months ago #19461 by ladytee06
Replied by ladytee06 on topic Re: NPLATE
Hi Christine
Great that you're count is up and if I were in the same position I'd be very happy too!
I had my sixth 'dose' today but my plt count is still only 16. I started on a 'mid range' dosage and it has been slightly increased each week but without anything remarkable happening as yet! (The 250mg you mentioned doesn't seem to be ringing any bells with me in terms of measurement of dose?)

Maybe those who have very kindly given their 'record' of Nplate use could also give us an account of the dosage they were receiving and what their maintenance dose is etc.

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14 years 5 months ago #19463 by ladytee06
Replied by ladytee06 on topic Re: NPLATE
Something I also wanted to ask others is whether they find that when they are having their weekly injection (or injections in my case) do they find that it stings a great deal when the liquid is actually injected and is quite uncomfortable?

Christine.....my hemo would be very happy if I were able to maintain a count of around 30 on the minimum dose required to keep it that way. At the moment I have a bad headache since yesterday's dose (which was increased) which will subside but normally takes 2 or 3 days to disappear. Unfortunately I have had headaches and some dizziness from the onset but that could just be me......as usual :laugh:
All the Best!

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14 years 5 months ago #19465 by Ann
Replied by Ann on topic Re: NPLATE
Sometimes the injection will sting because they use an alcohol swab to clean the site and then don't allow it to dry. Alcohol taken in with the needle will sting. Apart from that I've had no problems except that I do the injection into my stomach area which hurts far less in general than using the arm. You could try that if you haven't already.

Headaches are the most common side effect so it isn't just you. I've been lucky and don't get them but know others at the hospital who do.

As for the dosing.. it depends on your weight as it is worked out as 1 mcg (microgram) per kg (kilogram) of body weight. I weighed 60 kg when I started so my dosing starts at 60 mcg. I got up to the 5th dose which for me was 300 mcg and then back down to the lowest dose again. My doctor too is happy with a count above 30 rather than aiming for the above 50 mark but since he said that I've hovered around 100!
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14 years 5 months ago #19477 by ladytee06
Replied by ladytee06 on topic Re: NPLATE
Thanks for your reply Ann.
I'm still having my 'jabs' at the chemo unit but the nurses do think that the medication is quite thick (?) and that's why it could be a bit uncomfortable. They do normally allow the swabbed area to dry in order for the alcohol not to sting. I might suggest that they inject the stomach area next time I go especially if you say that it seems to be the easiest area to use.
Still a little disappointed with the count to date as I'm now having to have 2 syringes......
one full and one half full...can't remember the actual dose! I know that the maximum dose for me will be two full syringes (will check the actual quantity when I go next) which will probably be in the next two or three weeks unless something eventful happens before then! :ohmy:
What is your 'maintenance' dose Ann? How long have you had ITP and how low was your count? Apologies for all the questions but I'm wondering if this is going to do anything much for me!

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14 years 5 months ago #19516 by Ann
Replied by Ann on topic Re: NPLATE
I have had ITP for almost 6 years. I started Nplate with a count of 2. I'm using the lowest dose possible and yesterday's count was 76.
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14 years 5 months ago #19520 by tgurin12
Replied by tgurin12 on topic Re: NPLATE
I am not sure what mine is now, because I'm not sure what they started me at. They already lowered .25 once, because I was above 250 for two weeks. If I'm above 250 again Tuesday, they are going to lower .25 (250 ml) again.
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IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.