Romiplostin Nplate

[Benboy10]

Had my first Nplate injection today.Has anyone had this treatment,and is it successful .

[Robert1959]

NPlate was the only treatment that worked for me and I had great success with it.

It initially took 5 weeks before it had any effect on my count and I went from 0 to 33. After that it was the most incredible roller coaster of results as they tried to balance dosage amounts against my ability to destroy 150 platelets each week. For 2 weeks my count even went to 1100 so they need to be very careful with this drug as it can be very potent.

This went on for 5 months and then one week it all just stopped and my body went back to normal where it has now been for 2.5 years.

Unfortunately not everyone has the same success as I did so I hope that you can be as lucky as I was.

Please keep us up to date with your progress and your dosage amount in mcg/kg vs count as I always take an interest in people on this treatment.

[Benboy10 in reply to Robert1959]

Thanks for the information , yes will keep you updated

[HappyHopeful in reply to Robert1959]

Very interesting info! Any updates? My father is starting Nplate next week; platelets 10.

[Robert1959 in reply to HappyHopeful]

I hope that you father has success using NPlate but let him know that it may take a while to determine the required dosage amount and injection intervals so do not be discouraged if at first it does not seem to be working.

As for me, ITP is now just a memory as my life is totally normal again and it is as if it never happened

[HappyHopeful in reply to Robert1959]

That's incredible! I hope for the same positive fate for us. My fathers other blood lines (hemoglobin, RBC, WBC, etc. is all almost normal, but just his platelets have been drooling for the past 2-3 years, presently at 10)

Initially diagnosed as mild MDS (do you know what that is?) but seems more like ITP. Tried Eltromopag (worked to boost platelets but enlarged the actual platelets so they stopped it), Rituximab (didn't work), Danazol (boosted platelets but had to stop taking it due to liver damage after just a few weeks). Then we just waited and watched... stayed between 12-20 for about a year.

Now Nplate has been recommended to start next week.

Any and all advice or comments greatly appreciated... this illness has consumed the entire family and we are desperate for a miracle and I hope Nplate is the answer.

[Lynney11]

I took plate for 3 years and my count meandered all over the place but never higher than 105 and never lower than 40. It was the only thing that worked for me, after a year of trial and error. Do let us know how you get on.

[tip-3 in reply to Lynney11]

I got nplate injection and did not know it was going to be an ongoing affair; and I did not like the symptoms I was experiencing; but did get good results from same ..... I decided to stop nplate and looked into promacta (a daily pill); with monthly bood work. My hemo informed me if I had stayed on nplate it wud have been indefinitely; and now my counts are at 45 which he says is safe and thinking about taking promacta every other day .... ummmmmm .... but no appt. set up or further test so I am going to have my blood work done next month ..... Nplate increased my platelets better; whereas promacta they have been 100; 80; 70; 50 and 40 but told safe range .....

[HappyHopeful in reply to Lynney11]

Very encouraging! I hope this works for my father when he goes on Nplate next week. Is everyone only having extremely low platelets? How are other blood lines such as hemoglobin?

[Monty55555]

i'm currently on N Plate, im half way on the total dose, which is 1mcg I think, and at present its not doing anything, well I say not doing anything my level is staying at 9. I have my next blood test on Monday so would think they will up the dose.

thanks

[Robert1959 in reply to Monty55555]

Monty

They will start you off very slowly due to the potency of the drug.

I started off on 1 mcg, the next week 2, then 4, 6 and 8mcg/kg before my count finally increased.

[Monty55555 in reply to Robert1959]

Hello Robert

Sorry I meant I'm currently on 10mcg so half way through the trail period. I'm sure they will put it up this week.

Thanks Monty

[Robert1959 in reply to Monty55555]

Monty,

10mcg/kg is the maximum allowable dose of NPLate you can take so I don't think that they should be putting it up any further.

Let us know how you go.

[HappyHopeful in reply to Monty55555]

Hi Monty, how is Nplate working for you? My dads platelets are 10 and he starts next week.

[Monty55555 in reply to HappyHopeful]

hello Happyhopeful

at present it is working for me, last 5 weeks levels read 55, 96, 45, 37,106. very up and down but for me this is the last Drug before I go down having my spleen out. so as long as my levels stay above 25ish I will continue to stay on Nplate. Remember my first try with Nplate I didn't reacted I then had IVIG then went back to N plate and it started working.

Keep me updated on his progress

thanks Tom

[HappyHopeful in reply to Monty55555]

Wonderful news!!! I'm so glad that your platelets are UP and stable! If you don't mind me asking, how are your other blood components doing after taking Nplate? Such as hemoglobin, bilirubin, etc...

[Monty55555 in reply to HappyHopeful]

thank you I'm sure they are all fine, I don't know as I haven't asked, but if sure if they weren't very good I would have been made aware

thanks

[Kyriak51]

I had my first Nplate in 2010, working well for me without side effects, I'm currently on 650mcg weekly to maintain a count of 50 to 80k. When my platelets drop below 20K I experience brushing, fatigue, irritatebilty and depression which subsidizes as my counts increase. Speaking of depression during early treatment with dexamethasone. IVIG and Rituxan I started on antidepressants which was a mistake as all antidepressants have a negative impact on platelet function, my platelets dropped to 10K after 3 months of treatment. I stopped the Bupropion and my platelets recovered to my baseline over 6 weeks. I'm now attempting meditation, it's not easy for me but it's better than low counts. Be well, things will be better kyriak51

[tip-3 in reply to Kyriak51]

Yes i read where depressant meds can lower your count; but my other doctor has been prescribing the two pills which I read lower ur count; and the hemo is aware of same .... but I needed this med to feel balanced and hence my count is lower .....

[Justicekelly]

I was on nplate couple years ago. My count went from 20 to 70 in just 7 weeks. But due to cost had to stop. It's $1200+ each injection in the US. And my new insurance refuses to cover it. And after I stoped my count went from 70 to 12 in just 7 days

[HappyHopeful in reply to Justicekelly]

Hi there, glad to hear the Nplate worked for you and raised your platelets but it's a shame you had to stop due to its high cost How are you doing now? We are in the same boat.