NPlate

Hello. My name is Abby and I am 29 years old, and from Ohio. First, let me start with, I have been dealing with ITP since I was 11 years old. I did IVIG treatments, and then had my spleen removed in 2000 (which helped alot), then rituximab, and then back to IVIG when that failed. When I turned 18 everything seemed to calm down. My platelet count stayed above normal, until I was about 8 months into my first pregnancy. My platelet count dropped to 50K, which they just put me on temporary steroids to get me till I had my baby. Then I was good, had a normal delivery, my baby was healthy and most importantly my platelet count went back to normal! I then had another baby about a year and half later, and didn't have any issues. So, I'm not going to lie I did get pretty non-complaint with going to see my hematologist and would only get my lab work done when I felt bad.
Anyways, in May 2017, I started having issues. I had a nose bleed, didn't think much of it because I was fighting allergies and congestion when I had that. Then, the next Friday I had petechai when I woke up that morning, so when I got to work I was going to have the girls check my lab work (nice thing of working in a doctors office!) Well needless to say I got to work, got busy and forgot. However, over that weekend the petechai had went away, so I didn't think anymore of it, until that following Tuesday when I could hardly wake up that morning and was covered in petechai. So, I got to work had the girls check my blood work, and then Wednesday I called them to see what it was and they said it was 32K. I knew right then, I needed to call my hematologist and tell them what was going, but long and behold they told me it had been to long since they had seen me that I was consider a new patient and couldn't get me in the office till Friday.
Once, I got to work I found that I wasn't able to go to my appointment that Friday (long story), so I ended up finding a different hematologist that I absolutely love! They had got me in as a new patient that next day, and when I got to his office and they check my blood work my platelet count had already dropped to 8K, yes I said 8K. So, yep I got directly admitted to the hospital and had to still take that Friday off because I was in the hospital for 4 days and a high dose of steroids plus 4 days of IVIG. After I was discharge my doctor started to tamper me off my steroids because my counts were doing pretty good, then once we got to 10mg of my steroids it decided to start dropping again, so he increased my steroid because my husband and I were going on vacation and he wanted to get me through that before changing my medication.
So, once I got back from vacation, we started to tamper me off again, once again I got to 10mg and my count went to 50K, so we made the decision to start Rituximab once a week for 4 weeks, plus on my steroids. Before they would give me my treatment I had to get a CBC done, and each week my count would fluctuate between 50K and 90K. So, after the four weeks, he had me checking my blood count every week for 3 weeks and then I was to follow up with him. Each week I was get my blood count and he would decrease my steroid because he wanted to get me off it. Now, last week I got my blood work done and my count was 96K, I was told to take my steroid every other day and then on Friday that would be my last dose!!
However, I follow up with him to day and my platelet count was 32K, and back on my steroids. He said that he wanted to start me on the treatment called NPlate. I have never heard of it, I know it's an injection that I have to get once week, but my question is does anyone have any feed back on this medication?? I am going to be honest I have cried pretty much all day, because I have already for really depressed because I have been on these steroids for 3 months and have gained over 65lbs on these steroids and now I feel like everything I have done hasn't worked, so makes me question if I want to even do this treatment. However, I know that I need to do it because I have two babies that need their mommy. So I am just looking for any feed back that anyone has, side effects, if it worked for you, how long you were on it etc. I have looked up some side effects and not going to lie, they scare me...
PS Sorry for the long post but wanted you all to know what I have been through!
Abby

There are lots of posts on NPlate here. If you search you will find lots of information. Good luck.
Emily

Abby:
All of the treatments have scary side effects and personally, I think Rituxan is scarier than N-Plate. N-Plate stimulates platelet production and is one of the newer drugs, although it's been around for more than ten years. Many people have success with N-Plate. The goal with this drug is not to have normal counts, but to dose it so that counts stay around 50k. The main risk is blood clots and having had a splenectomy, you are already at risk and wouldn't want counts that are too high. It can take time to get stable counts.

You also might want to ask about N-Plate. It basically does the same thing, but is a daily pill. Most people are able to achieve more stable counts on this drug. It must also be dosed so that counts stay around 50k.

I think Sandi meant Promacta as the daily pill. I have tried N Plate but lost response to it so changed to Promacta. Have been much happier on it. Counts swung alarmingly on N Plate . Much more stable on Promacta, more control and can tweek about with dosage maintain more steady count

Yes I did mean Promacta. It was early in the morning and my brain wasn't working yet. Thanks for the correction!

abradford wrote: ...
Anyways, in May 2017, I started having issues. I had a nose bleed, didn't think much of it because I was fighting allergies and congestion when I had that...

From what I've seen, those that respond to steroids and have allergies often find some amount of relief in the ITP department when one's allergies are managed/treated as well.

Abby, I totally understand about the steroids and weight gain! Prednisone will make you crazy-emotional too. Going up and down with the doses seems hard, its the rollercoaster. I gained 30+ pounds on prednisone and I was not skinny to begin with. I ballooned out to over 200lbs, plus the weird distribution of fat, it seemed to be all in my upper body and neck- not a good look on me. I was suffering from sleep apnea, hair loss, moon face, anxiety, mood swings, insatiable appetite. I finally got off prednisone in 2015 after being on it for over year. That felt so great! I have since lost 40lbs. With a diet change and no prednisone the weight came off fairly easily and all the symptoms of sleep apnea, moon face went away.

I then went to Promacta for a while with just a few side effects- omg so much better than steroids! Then went to Nplate which is my favorite drug for ITP so far. Its easy for me, I feel good on it. But as mrsb said, counts can tend to be up and down with Nplate and were more steady with Promacta. Both Promacta and Nplate have been created especially for ITP and in my experience they are good drugs. They are designed to keep platelet counts safe at around 50K, not meant to push counts to over 100K. Risk of blood clots increase when counts get high. Many people seem to have very good experiences with little to no side effects. Plus quite a few lucky people go into remission with these drugs. Good luck and let us know how it goes! And by the way, great you had two healthy babies without a lot of ITP complications!

Hi Abby, I have been on Nplate for 5 weekly doses now and have responded with 118-143 counts. I do have some mild side effects that are manageable. However I am starting to developed some abdominal discomfort this week with what I would describe as a burning soreness on the outside of my lower intestines. About a 3 on the pain scale. The only other persistent issue is my mouth tastes like turpentine often. I would highly suggest visiting the Nplate website and reading the package insert, and watching their neat video on how it works.