Nplate first shot: What to expect

I received my first shot today of NPlate. I have been off Promacta now about a month. My platelets dropped to 10 at one point since stopping and I received a platelet transfusion. Since then I have been taking 20mg of Prednisone until NPlate gets rolling. I see that alot of NPlate users seem to get achy feeling. If this happens is it all the time or just a day or 2 after the shot? Just wondering what to expect. Thanks all!

I have/had no achy feeling with Nplate - in fact no side effects. You may have an achy feeling as you come off the prednisone - it just depends on the dosage and how long you are taking it.

I had no side effects from Nplate either. It takes about 5 days for the injection to start working so you may not see much of an improvement until the first week is over.

I have had no side effects from N-Plate either. But after 18 months on the shot and my platelets pretty high (between 80-100K) they seem to be going down now. Have to wait and see what happens!

Ccurley,

I was on Nplate for about 6 months before starting Promacta. I did feel very achy. However, I needed the highest dose for my weight to get a response, so I don't know if that had something to do with it. I would get my shot on Tuesday and feel achy on fri or sat. Luckily when my counts were high enough I was allowed to take ibuprofen which helped. I don't get the aches on Promacta. However, if I had to do Nplate again I would. It was more of the pain of having to go to get the labs/shots that got to me the most. May I ask why you stopped the Promacta?

Well I seemed to have gotten all the side effects. First of all I have HepC so my liver had not so great liver function tests anyway. After 2 years of Promacta I became jaundiced (about 6 weeks ago). Stopped and my liver function tests have never been better so that was my biggest issue. I also got cataracts in both eyes. Supposedly a side effect as well. Had cataract surgery in both eyes but I must admit I like the new eyes . I was on the study for Promacta back in 2009 as well and it worked great. I pushed to get this after I had a brain bleed in 2012. It worked for sure. I am starting new treatment for HepC and would certainly think about it again if I could clear the HCV.

I had my second shot and went in for a colonoscopy/endoscopy 3 days later. After the prep and all that fun they did a CBC and found I was down to 3 platelets before the procedures. I was admitted overnight did dexamethasone for 4 days and platelet 33 now. Got 3rd shot yesterday and will be on Prednisone 60mg until Nplate takes off for me.

I just did my 4th shot and taking 60mg Prednisone. Platelets are lower 20s (normal for me really even on Promacta for 2 years I rarely was about 35). Any of you take a while for the NPlate to kick in? They said they would keep me on the Prednisone until they see platelets rise then tamper me down. What if 20s-30s on NPlate is as good as it gets (which works for me since its all I ever had). Just wondering about others experiences and thanks!

My count was 5 a couple of weeks ago. Was on put on 80mg preds.

1st week count bounced to 19. Stayed on 80mg preds.

2nd week count stayed at 19.

She is now giving me 50mg of Eltrombopag (UK version of N-Plate) oral for 7 days and dropped my preds to 50mg per day.

I start tonight and will have my next test in 7 days so I am interested to see what happen as this is my first time on N-Plate.

Funny thing was I asked about side effects and she just went to the companies website lol.

I just laughed as the list was ridcolusly long but she simply said that most people are fine.

She just said usual about bleeding etc to come straight to hostipal.

So far though other then some small bruising, most of which has already faded and a few blood spots, all is good. I actually feel pretty good.

Hey Ghost, sounds like a plan. Eltrombopag is Promacta though, not N-Plate. I hope it works for you. Many drugs have side effects with a very long list, but most of the time people only get a shortened version of the most common ones.

Eltrombopag is Promacta here in the US? I was on the study for Eltrombopag in 2009 then was put on Promacta (other name for it) in 2012 for the last 2 years. I just stopped in January. I did get side effects (2 cataracts and liver functions went wild (but mind you I do have Hepatitis C so that was certainly a factor)). NPlate is Romiplostim here.

And just to confuse even more.. eltrombopag is called Promacta in the US and Revolade in the UK.

lol.. when she told me I was going on Eltrombopag I asked if that was the UK version of N-Plate and she said yes..

oh well.

So what is the difference between N-Plate and Promacta then?

GhostRider I found this:
www.regencerx.com/docs/physicianRx/blood-modifiers-promacta-nplate-07-2009.pdf
and this link
www.healio.com/hematology-oncology/news/print/hematology-oncology/%7B78526a9c-4938-461d-8f31-5e209a4279c8%7D/romiplostim-and-eltrombopag-in-a-class-of-their-own

For me personally the NPlate did not have the liver side effects that the Promacta had.

The more I read about both N-Plate and Promacta the more I go wtf!!!

There seems to be so many different reports and studies stating how they should be used, when they should be used, their effects, benefits, side effects, risks etc..

Some of the reports/studies are damn right scary lol.

I think I will completely ingnore all these studies I keep finding and just go on what people who have used the drugs say.

The advice and thoughts of those who have actually used the drugs far out weigh any random report to me.

Read this one. It's not scary.

Thrombopoietin-receptor agonists (Tpo-RAs) are highly effective in immune thrombocytopenia (ITP). Recently, cases of durable remission after Tpo-RA discontinuation in adult ITP have been reported. We aimed to describe the subset of patients in whom transient Tpo-RA therapy may induce a durable response. We studied all adults with primary ITP treated with at least one Tpo-RA over a 5-year period (n = 54) and seen at one of three participating referral centres in France. Tpo-RAs were discontinued in 20 of 28 patients who achieved a complete response. We excluded six patients because a previous treatment at the start of Tpo-RA treatment may have interfered with the response. Overall, eight patients with chronic ITP showed a sustained response [median follow-up: 13·5 months (range 5-27 months)]. We could not identify a predictive factor of sustained response. In conclusion, a substantial proportion of ITP patients receiving Tpo-RAs can maintain a durable response after treatment discontinuation.

Good idea. Trying to read thru it does scare you. Again I have HepC so I already had/have liver problems.

Both drugs work to force the body to make more platelets but they do work in slightly different ways. Nplate doesn't affect the liver while Promacta/Revolade can do. Nplate doesn't cause cataracts while the other can do. Both have headaches as a common side effect.

All you really need to note when using either drug is that the aim is to get counts of around 50. High counts can cause clotting because of the high percentage of new, large platelets in the blood. So keep the count as low as possible in the safe range should be the aim.

In the UK you can self inject with Nplate which makes it an easy treatment regime. That is not possible in the US at the moment so Promacta tends to be more popular.

Following the discussion, thankfull for it.


Health and Good Vibes

Reboot

Just back from Dr. Platelet from 21 to 27 so taper down to 40 Prednisone for the next week. 5th shot today. Good news as far as I'm concerned.

Good to hear your numbers are moving up Curley! Are you having any side effects?

I got my first shot of NPlate last week. I decided to stop Promacta because I was having morning headaches that lasted until noon, and brain fog. Thought I might have fewer side effects with Nplate. Plus Promacta was costing $400. a month copay. Nplate might end up costing as much, not sure yet. I'm on Amgen's First Step program- haven't gotten any bills yet except a $15 office copay.

So my hemo started me on a very low dose .80mcg, less than the suggested amount which is 1mcg. He just likes to take things easy. He said he would prefer my counts be between 25K-50K since I don't have problems with bleeding. I like that, I feel more comfortable around 50 or below too. My counts started at 2K and after a week they are at 12K- woo hoo! Though the 12K could be from the 6.25mg prednisone that I'm also on.

Today got my second shot of NPlate. He bumped up the dosage to the suggested starting point of 1mcg.

I felt terrible the morning after the first shot- headache, faint dizzy, weak. I was at work and could barely function. Felt better by noon. Also had a weird insomnia the first night, like I couldn't get into a deep sleep. Next few days had a morning headache and felt a bit unwell. By day 5 I felt good somewhat fatigued but not bad. Overall the side effects have been tolerable, hoping this week is better and they go away soon. Anyone else have these kinds of side effects? Did they go away? Or get worse with higher doses? thanks!

I don't seem to have side effects as such. My platelets the last 3 weeks were 21/27 and yesterday 15 (I dropped from 60mg to 40mg Prednisone from 27/15 so that could be that) and 15 is fine for me. I am having at least one blood blister a day in my mouth. It appears then goes away that is about it. bruising is clearing up a bit but with the Prednisone and moving about so fast I seem to bump into everything and new ones constantly cropping up. I was lead to believe that 4 weeks of shots and your platelets remaining about the same is a good thing. Hoping for that as I'm sure you are. I get my shots on Friday. Keep me posted and I'll keep you posted so we can watch our progress.

Just got my third NPlate shot yesterday. My counts are up^ to 24K -yay!

Started at 2K -NPlate .80mcg
then 12K- NPlate 1mcg
then 24K- Nplate 1mcg

First day/first week after NPlate injection was the worst- insomnia, headache, faint. The second week was not bad at all, had one night of insomnia and a mild headache. Not really any other side effects. great! I feel good after the 3rd dose, no insomnia, no headache.

My hemo wanted to stay at 1mcg- he's thinking that my counts might continue to climb on that dose. Hes all about "give it time to work". I'm also taking 6.25mg prednisone and will be tapering down to 5mg this week- so glad.

I can't believe I'm saying this but I think I like NPlate better than Promacta. I feel more "normal"(whatever that is) just feel overall better, my thinking is more clear and focused. Plus it worked fast- all bruising symptoms went away in 3 days. I don't mind going into the office once a week on my day off. So far so good!

PoseyMint great news. I did my, now losing track, I think 6th shot and was 29 so tapering down to 20mg Prednisone this week. I also started treatment for my Hepatitis C this past Wednesday with Solvadi and Daclatasvir (amazing results from the clinical trials). Getting rid of the HepC may help with the ITP as well. We shall see. Slept almost 7 hours last night after the drop from 40mg to 20mg Prednisone (probably all in my head but nevermind). I agree on the NPlate better than the promacta for sure! Hopefully still up and can drop down a bit more on the Prednnisone. Seems you are dropping a bit slower I guess he will have to drop maybe to 10 then 5. Will post next results. Take care.

Curley- oh I'm sure dropping from 40mg pred to 20mg will improve your sleep! Good news your counts are going up.

Yes, I am tapering pred very slowly- I've been on it for years and my adrenals have likely atrophied. Hoping its not permanent and they will fluff up again! My hemo was encouraging- he thought they may already be working a bit. I tried to taper from 6.25 to 5mg and I was okay for a day, then next day got fatigued so took a tiny bit more. I think I'll go every other day 5.5 then 5mg. If I go too fast my symptoms are profound fatigue, body aches, fluish feeling. If you haven't been on pred long you won't have so much trouble tapering off.

Got my 4th NPlate shot today. Counts were at 30K- haven't seen the 30s since 2011! Hemo is comfortable with 30K as I am. But he wants to get my counts to 50K because it is the recommended or agreed upon way to use NPlate, getting to 50K he said "proves" that the NPlate is working. Then after that is done he will drop the dosage back. Its a little silly but I sensed he wanted to do this one thing by the book, so I'm going along with it.

Interesting, he said that its recommended to increase NPlate dosage by 1mcg which would bump me up to 2mcg. But he said he thinks thats too much of a jump and its where people get into trouble with sky rocketing numbers, so he chose to increase from 1mcg to 1.3mcg.

I was able to taper to 5mg prednisone this week- woo hoo It really makes a difference. I'm not having acid reflux so much at 5mg (plus I've discovered Pepcid which is great). I had a chronic cough from my esophagus being burned by stomach acid and that seems to be gone- yay

I like your doctor. I'd be very comfortable with his way of working. Great that Nplate is working. Good luck.

That's great poseymint! This week I was 21 down from 29 but still in my normal range and he dropped me to 15mg Prednisone. The HepC treatment is going full on as well (but the new drugs do not mess with the platelets so shouldn't matter with the Nplate) and liver enzymes have dropped quite a bit in just 10 days treatment, which is a good thing. Bruises are clearing up slowly but surely. I am still getting a few blood blisters in my mouth thru out the week but that is it as far as ITP SX and they appear then disappear within hours. Less last week. I really think that my platelets drop a little after the Nplate shot because the day after I always have one or 2 in my mouth. Well onto another week!

Day early this week. Platelets up to 23, one point at a time looks like. Feel good. Dropping to 10mg Prednisone. New HepC treatment looks like it is working all Liver function testing is normal for the first time in probably 30 or 40 years. Poseymint how are your numbers?

Curley- great your HepC treatment is working! Wonderful about your liver function- thats awesome!

I guess my honeymoon with NPlate is over. My counts went down last week. I tried to lower prednisone from 5mg to 4.5mg. That didn't fly. Hemo suggested I just stay at 5mg until the NPlate is stabilized "so theres not two variables". That makes sense. I'm so anxious to get off prednisone! but will be reasonable and wait.

Seems like I may be losing my sensitivity to NPlate because we're bumping up the dosage and counts aren't going up much. Still the numbers are fine, and from what I read, Nplate is not entirely predictable. My side effects are insomnia the first night- I'm taking Benedryl for that. headachey, general unwell feeling the first couple days. Stress makes it worse I think. Seems if I were not at work I'd feel better.

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

For several weeks it seemed like my platelets were higher in the middle of the week and then dropping by day 7. So I decided to test it and got a CBC at Lab Corp in the middle of the week. Then got another in the hemo's office at the end of the week. To my surprise it was the opposite! The middle of the week CBC was 15K, and the hemo's office 2 days later was 29K! huh? My hemo said it was the labs- esp when counts are low, labs can differ that much. wow that was news to me.