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Nplate first shot: What to expect

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11 years 7 months ago #41758 by Vdeutsch85
Replied by Vdeutsch85 on topic Nplate first shot: What to expect
Posey mint,

Do not stress yet. It took awhile for Nplate to kick in for me. It also took a 2nd opinion to figure out it did work just needed a very high dose. I went up to 5 mcg at one point and then was slowly able to drop down.
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11 years 7 months ago #41770 by ccurley
Replied by ccurley on topic Nplate first shot: What to expect
I am moving very slowly Poseymint and it has been weeks so does look like it takes a while. My last treatment was 400 mcg I guess that is. I have been on the same dosage for a few weeks.
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11 years 7 months ago - 11 years 7 months ago #41941 by poseymint
Replied by poseymint on topic Nplate first shot: What to expect
Well I made it to the big 50- woo hoo! My counts on Friday were 58K- sort of amazing. I don't know what to do with so many platelets!

Hemo and I agreed to stay on 3mcg of NPlate (plus 5mg prednisone that I've been on forever) for another week or so to make sure the count is stable, then begin to taper off pred.

Another surprise is fewer side effects this week. yah! I didn't have insomnia the first night and headache was much milder, felt generally well. Though I notice I'm more sensitive to stress- feel a bit ill when things get stressful at work. All in all, I'm happy. :laugh:

Started at 2K
NPlate .80mcg- 12K
NPlate 1mcg- 24K
Nplate 1mcg- 30K
Nplate 1.3mcg- 21K
Nplate 2mcg- 29K
Nplate 3mcg 58K
Nplate 3mcg

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11 years 7 months ago #41942 by Ann
Replied by Ann on topic Nplate first shot: What to expect
Sounds like you have a very careful doctor Poseymint. You'll probably now start going up on the 3mcg and have to come down the doses again. That's what most of us seem to do.
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11 years 7 months ago #41954 by Vdeutsch85
Replied by Vdeutsch85 on topic Nplate first shot: What to expect
Posey mint,

Yay! I'm so happy that you made it up into the 50's! I hope you had a platelet party or at least some ice cream to celebrate! Your doctor does seem to really understand Nplate and is so patient with it!

Ann,

I am in awe of all of your knowledge! You know so much. You nailed my Nplate experience! I was up to 5mcg, which is the highest possible and I'm a petite person, but was able to gradually come down.
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11 years 7 months ago #41967 by ccurley
Replied by ccurley on topic Nplate first shot: What to expect
I am still having blood blisters about 4-5 days after the NPlate shot. Tomorrow another shot will see where I am. It seems the blood blisters come Tuesday or Wednesday almost like clockwork (4 weeks in a row now), go away by Thursday for my shot and platelets are in the 20s (again we will see tomorrow). Last Tuesday platelets were 6 (recd CBC for something else besides NPlate) then on Thursday they were 26 (up 3 from the week prior). I am on the HepC treatment for 18 more weeks but there is no interferon or any drug that is "suppose" to mess with my platelets and Viral load for HepC is <15 after 3 1/2 weeks of the new treatment and liver functions all normal. Will just continue on as usual. Not much on bruising and no nose bleeding or gums bleeding so I will just ignore the blisters for now. Making me crazy but that's the ITP snafu isn't it.

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11 years 7 months ago - 11 years 7 months ago #41969 by Ann
Replied by Ann on topic Nplate first shot: What to expect
It takes an Nplate injection 4 or 5 days to start working so the fact that you still have blood blisters then is exactly on schedule. But if you are getting blood blisters every week why is the dose not increasing? If you were to increase the dose as per protocol your count wouldn't fall so low before the next injection could start working.

Or, are you already on the highest dose for your weight and therefore can't go any higher?
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11 years 7 months ago - 11 years 7 months ago #41976 by ccurley
Replied by ccurley on topic Nplate first shot: What to expect
I will mention tomorrow morning. My platelets are always up a bit from the following week is why they have probably not upped the dosage. But I did mention about the blood blisters over the last 3 weeks and they were phoned last Wednesday regarding the drop to 6. My normal is in the 20s and 2 years on promacta I was rarely over 30 so hopefully they do increase it tomorrow. Thanks all. Not 100% sure about being at the highest dosage.

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11 years 7 months ago - 11 years 7 months ago #41977 by ccurley
Replied by ccurley on topic Nplate first shot: What to expect
Great news PoseyMint!!
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11 years 7 months ago #41979 by Ann
Replied by Ann on topic Nplate first shot: What to expect
There are ten doses ccurley, so by rights if it's done properly there should be at least ten weeks with increasing doses before thinking it's not working.

You should aim for 50, you never know you may get there. It's normal to fluctuate over the week but the idea is to get a high of 50 and a low of somewhere safe.

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11 years 7 months ago #41987 by ccurley
Replied by ccurley on topic Nplate first shot: What to expect
Went today platelets were 22 and I am at the highest dosage right now. This is my 9th shot. Also still on prednisone of 12.5mg daily.

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11 years 7 months ago - 11 years 7 months ago #42028 by poseymint
Replied by poseymint on topic Nplate first shot: What to expect
My counts dropped on day 5 too! okay- the platelet party is over, everyone clear out. ;)

counts this week were 39K. Down from 58K last week- same dosage 3mcg.

I could tell I had high 50K counts on day 4, my skin was really clear. Then day 5 I noticed slight symptoms of low platelets. still good numbers, I just foolishly expected NPlate to behave the way I wanted it to.

I'm not having side effects on this dosage so decided to stay on it for now. I have a busy stressful weekend ahead, didn't want to increase the dosage and risk having headaches and insomnia. Hemo liked that idea for his own reasons. He said depending on what my counts do, staying on 3mcg will tell us if the drop was just a normal fluctuation or if this dose in losing its effectiveness.

Curley, one good thing is your counts are staying in the 20s even though you are tapering prednisone fairly quickly. So perhaps that means the pred in not doing much.

Thanks Ann for your input! Its so helpful- great information. Thanks VDeutch for your experience too- so helpful. I really appreciate it all.

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11 years 7 months ago #42031 by Vdeutsch85
Replied by Vdeutsch85 on topic Nplate first shot: What to expect
39 is not too bad. I'm at 40 as of yesterday on a lower dose of Promacta. We are only 1 platelet away. Do you want to share my extra. We can both be at 39.5?
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11 years 7 months ago #42032 by ccurley
Replied by ccurley on topic Nplate first shot: What to expect
I dream of being 39 :)
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  • weirdjack
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11 years 7 months ago - 11 years 7 months ago #42084 by weirdjack
Replied by weirdjack on topic Nplate first shot: What to expect

I dream of being 39


I do as well.....platelet count and age both.

Why do I hear Bob Seger wailing in the background; "I feel like a number....." ? :)

.

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11 years 7 months ago #42085 by ccurley
Replied by ccurley on topic Nplate first shot: What to expect
WeirdJack true so very true! :)

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11 years 7 months ago #42094 by Vdeutsch85
Replied by Vdeutsch85 on topic Nplate first shot: What to expect
If I could share platelets and years I would.

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11 years 7 months ago #42124 by ccurley
Replied by ccurley on topic Nplate first shot: What to expect
Today's results. Up to 27 and told to taper down the prednisone to 7.5. So a good day. This is my 10th shot. Fingers crossed for next week. How you doing Poseymint?

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11 years 7 months ago #42150 by poseymint
Replied by poseymint on topic Nplate first shot: What to expect
Curley thats great news- so good to be below 10mg on the pred. I know it makes such a difference.
I've been seeing ads on TV about the new drug for HEP C- sounds like a wonderful thing. do you have to keep taking it? or is it a cure?

My counts bounced back up to 56K this week. I am continuing on 3mcg NPLate. Hemo said he considers this a my dose and so he will not need to see me for 4weeks- I'll just come in for a CBC and the injection. Also he said 40K-50K is the range we want but won't worry if the numbers go up and down. Only if they trend down below 20K and stay there will we change the dose. He didn't mention if they go too high, but I'm thinking I'd like to stay below 70K.

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11 years 7 months ago #42151 by Vdeutsch85
Replied by Vdeutsch85 on topic Nplate first shot: What to expect
Posey mint,

Great news!
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11 years 7 months ago #42153 by ccurley
Replied by ccurley on topic Nplate first shot: What to expect
That is good news. I hope I can get there soon :)
The HepC treatment is Solvadi and Daclatisvir and 24 weeks treatment if I am undetected 12 weeks after treatment is completed I will be considered cured. So it is exciting. I hope to be totally undetected next visit I am <15 now which is great.
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11 years 7 months ago #42160 by Vdeutsch85
Replied by Vdeutsch85 on topic Nplate first shot: What to expect
Ccurley,

I was watching a documentary on HIV yesterday. I had no idea that treatments could really make it undetectable. I'm assuming this is similar to hep c. It's amazing how far treatment has come. It's taken a long time but at least we are getting there!

I wish you the best of luck with your treatments!
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11 years 7 months ago #42169 by ccurley
Replied by ccurley on topic Nplate first shot: What to expect
Vdeutsch85. Thanks so much. It is amazing the HepC treatment. I have tried since about 2009. This is my 3rd treatment and this one has no side effects, best ever. No needles (interferon) just 2 pills a day. ITP has been an issue in previous treatment but not this one so all in all things are looking up and I am optimistic.

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11 years 7 months ago #42170 by Vdeutsch85
Replied by Vdeutsch85 on topic Nplate first shot: What to expect
Ccurley,

I will continue to keep my fingers crossed! I'm glad you are having no side effects. Maybe there will be a cure in the near future.

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11 years 5 months ago - 11 years 5 months ago #43330 by poseymint
Replied by poseymint on topic Nplate first shot: What to expect
Update: Doing well on NPLate- very happy with it! In 8+ years of ITP this is the easiest most effective treatment so far.

After several weeks of trying dosages, we found the right dosage to be 3mg NPlate for 1 kilogram body weight. That dose took me up to the goal of 50K platelets. The numbers bounce around a bit but stay within a good range.

Side effects: I get a slight insomnia the night after the injection, and sometimes a mild morning headache that goes away when I move around and drink a bit of coffee. Have to go in to hemos office to get the injection, don't mind doing that but it is a time commitment.

I'm thrilled that there is no copay when I just get the injection! $20. when I see hemo. Insurance (ObamaCare) is paying 100% of drug and injections costs. wow I'm only paying about $20. every 6wks. yay! Plus I'm on a program through Amgen that pays any drug costs that the insurance won't cover. weekly counts have been:

58K 39K 56K 42K 68K 58K 50K 52K 42K 30K 58K

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11 years 5 months ago #43331 by ccurley
Replied by ccurley on topic Nplate first shot: What to expect
Great news poseymint!!! I am leveled off and all is well. I am still between 15 and 30 weekly and down to 2.5 prednisone. I like the NPlate as well. Went to the UK and took shot along and injected there so that was a relief, wasn't sure if I could get it for travel so know that will work for any future trips. Weekly visits on my end as well, it is sort of annoying but what can you do. The HepC treatment worked as well. I have been "undetected" since my 4th week and on my 16th week coming up. End of October and that treatment is over. Doctors think that getting rid of the HepC may help with the ITP. Fingers crossed. Not much up and down since I cleared the HepC so just maybe. 12 weeks after my end of treatment if I am still undetected I am what they consider "cured" so that would be a miracle in itself!! Glad you posted! Talk to you soon....

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11 years 5 months ago #43334 by Joerg
Replied by Joerg on topic Nplate first shot: What to expect
Hi ccurley,

when you say that you took Nplate with you - how did you do that?
Did you take your own cooler or have you given it to the airline?

Cheers
Jorg

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11 years 5 months ago #43335 by ccurley
Replied by ccurley on topic Nplate first shot: What to expect
Yes I bought a little square bag that you put in the fridge and it freezes on all sides. I also put another ice bag from the fridge in with the medicine. Just carried it on. Flew to UK from US and still chilled when I got to the flat.

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11 years 5 months ago #43339 by Joerg
Replied by Joerg on topic Nplate first shot: What to expect
Thanks for the info!

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