N-PLATE

[rharvin]

Hello Lovely ppl

Question have anyone tried n-plate?  and did it  or didnt work for you? 

[crissy22a]

Yes, I, ve been on it for nearly two years. It has saved my life. My platelets are over a hundred after every weekly injection.  

[rharvin in reply to crissy22a]

Thats nice i've been on nplate for a couple of weeks and it dont seem to be working for me I've heard good results from other people 

[HappyHopeful in reply to crissy22a]

Hi Crissy, such awesome, encouraging news... hoping the same for my dad. Are you still doing well on it?

[tayloreat]

Hi,

What is N-plate?

[Hidden]

Hi, I have been on Nplate or romoplostim for nearly a year now.  I previously had over 4 years, really stubborn platelet counts, normally about the 20 mark, Nplate has improved my platelet count to between 30 or 40.  So all in all, yes it works for me. 

[rharvin in reply to Hidden]

Thats good my platelets are not reacting to the nplate 

[HappyHopeful in reply to Hidden]

That's amazing! I hope it'll be the same case for my father who will try Nplate next week for platelets hovering around the 10 mark.

[HappyHopeful in reply to Hidden]

Hi! Is it still working well for you?

[Hidden in reply to HappyHopeful]

Sorry, I would love to say yes, but Nplate suddenly and dramatically stopped working on me, platelet count went through the floor. So my specialist put me on Eltrombopag, tablet form, 100mg daily. Up until now platelets have remained on the low side but reasonably consistent, which is a good thing. As with all the available ITP treatments, we all respond differently, all have differing side effects and different long term outcomes. I really hope that your father is one of the lucky ones and goes into remission..

[angelarosemarie]

I have had ITP for about 15 years.  My platelets used to be around 2,000 to 4,000 when I was first diagnosed. I've had my spleen removed, and been on many different drugs to control my platelets, none of which were successful.   Prior to being put on NPlate, the only thing that would keep my platelets above 40,000 was having IVIG infusions every 2 to 3 weeks.  Now, I have been on NPlate injections for approximately one and a half years and my platelets haven't gone below 70,000. Most of the time they are closer to 100,000.  It has really been a Godsend to me and I pray it will be for you!

[rharvin in reply to angelarosemarie]

Idk but its not working for me i wish it did

[angelarosemarie in reply to rharvin]

So sorry NPlate doesn't seem to be working for you.   Prior to my first injection, I was told that it doesn't work for everyone.  Please don't let it get you down, because there are countless other things they can try. Previously, many things that worked for others, never worked for me.  Finally, after 15+ years, I am blessed to have something that works.  I have to go to the hematologist every 3 weeks for the shot, which is annoying, but it is better than the alternative.  I pray that you will eventually find something that will work for you too!

[rharvin in reply to angelarosemarie]

Thank you  but they are now talking about a splenectomy because I'm in the hospital now and I've tried different medications and I've been on IVIG for a while and it just seems like my platelets are not moving 

[angelarosemarie in reply to rharvin]

I know it's scary, but try not to worry.    I had a splenectomy about 4 months after my initial diagnosis.  At that time, I was told I had virtually zero platelets.  I was concerned about having the surgery with no platelets, but they gave me platelet transfusions prior to and after the surgery.  My platelet count went up following the surgery, but within a couple of days, the count 'bottomed out' again.  I was also on mega doses of steroids which didn't help either.  I hope the splenectomy works for you.  At the time of my splenectomy, my hematologist said about 80% of ITP patients who had their spleen removed were cured.   I wasn't one of them, but I hope you are!  If you have the splenectomy, I wish you the very best of luck, and  I will say a prayer that it works for you.  

 

[rharvin in reply to angelarosemarie]

Thank you....but thats what I get so worried about nervous about that if I have the surgery will it work or will it be a waste of time and now I'm in a spleen is missing and my platelets are still low and I'm still experiencing nose bleeds and low platelets 

[rharvin in reply to angelarosemarie]

How long did you have itp before you decided to have the surgery and how long ago

[angelarosemarie in reply to rharvin]

I was diagnosed in February 1985 and had my spleen removed in July 1985.  It was a very difficult decision for me also.  I was so tired of the nose bleeds that wouldn't stop easily, the painful blood blisters in my mouth, the blood filled bumps when accidentally banging into something, and mostly, hemorrhaging during my periods.  At the time, I felt I had no other choice, so I agreed to the splenectomy.  Do I regret it? Yes,.....because it didn't work!  But, there was a chance that it could have worked, and that's why I agreed to do it.  If I were you, I would do some more research regarding splenectomy.  I've read that most ITP patients who have gone into remission after a splenectomy don't stay in remission.  The stats are that it doesn't last.  Don't know if that's true.  If it is true and if I had known this, it might have made a difference in my decision.  Ask your doctor about that. 

[rharvin in reply to angelarosemarie]

The doctors here in New York make it seem like it's the best thing for you it might work for you because ive been in and out the hospital because your platelets are low all the nosebleeds that's going on all the gum bleeding you know it could be tiring which I know and which I understand but I'm just too nervous because I haven't really heard of anyone with good reviews about getting a splenectomy

 so I was trying to see a different doctor to get a different opinion but you know so far I'm in the hospital a couple of days trying to get my platelets up and they've been giving me IVIG to try to help but I'm just hoping for better numbers today but they still haven't come up enough to discharge me.....are u in ny

[angelarosemarie in reply to rharvin]

Yes. I live in Upstate New York, in a suburb of Syracuse.  I've been going to  the same hematologist since I was first diagnosed.  He is in a group called Hematology Oncology Associates of Central NY.  They have a website.  You can Google them if you want to.  Are you hospitalized in New York City?

[rharvin in reply to angelarosemarie]

Yes I am I've been here since Saturday night I experienced a  bad nose bleed and they've been giving me IV IG and they they give me platelets so I'm still here trying to wait for my numbers to go up to be discharged

[angelarosemarie in reply to rharvin]

  When I was first diagnosed I was in and out of the hospital repeatedly.  Each time, my doctor wouldn't release me until my count was at least 40,000.  The IVIG and platelets used to help me get up there.  Hope it does for you too!

[rharvin in reply to angelarosemarie]

I've been getting that for over a year now and it's not working for me and that's another reason why I'm in the hospital longer than I'm usually here um is there a way that I can call you to discuss this issue with you

[angelarosemarie in reply to rharvin]

I would be happy to discuss this with you by phone.  I will send my number in private message. 

[HappyHopeful in reply to angelarosemarie]

This is so encouraging! I hope and pray this will be the ticket for my father as well. His platelets are now hovering around the 10 mark.

[Robert1959]

NPlate was a great success for me. I had taken all the other treatments without success and was stuck at 0 with the prospect of a splenectomy looming when I started on NPlate. After only 5 months on NPlate I went into remission and have maintained a count of 200+ for 16 months since without any treatments - I consider myself to be very lucky compared to many others with this condition.

[QT200QT600 in reply to Robert1959]

Can I ask how you knew you were going into remission, did your count start to rise whilst maintaining the same dose of Romiplostim?

[Robert1959 in reply to QT200QT600]

I had no idea I was going into remission, it just happened 1 week when my count increased without any medication. Prior to that I was in a (rough) cycle whereby when my count was at 150 I would get an injection and my count would jump up to 600. At that level I would not get an injection and my weekly count would then drop to 400, then 250, then 150 and I would get another injection. My count would go back up to 600 and the same cycle would happen again. This happened 3 times and on the last time I was back at 150 we decided not to have a dose and see what happened. I had expected my count to be back to single digits as I seemed to destroy 100-150 platelets a week when not on the NPlate but to my surprise it was at 195 and no injection was given. The week after that it was 220 and the same the following week and I was then considered to be in remission. I made no other change to my lifestyle, diet or anything and it is like my body just decided to go back to normal where it has been ever since. The only issue I had with NPlate was a mild headache and this disappeared shortly after I finished my last injection.

[HappyHopeful in reply to Robert1959]

This is incredible! I am hoping my father will have success like you! His platelets are hovering around the 10 mark.

[rharvin in reply to Robert1959]

I wish it would work for me I've heard so many good results idk whats going on with me

[Robert1959 in reply to rharvin]

It took 5 weeks and an 8mcg/kg dose before I reacted so don't give up hope just yet.

[QT200QT600]

Yes, so far, so good. Easy to inject. I'm currently hovering around a 90 count, which is all fine and dandy. You need fridge space for it, particularly with a months supply.