Nplate experiences please

[Loftyc]

Hi all, was going to start rituximab but hemo wants to try Nplate first. Has anyone had a good / bad experience with this?

Thanks

[Dahle2424]

Good evening Loftyc, - In preparation of Open heart surgery and a count of 3K, I was started on Nplate and 9 treatments later (1x per week) was a bust. Never got higher than 14K.

24hrs of IVIG and platelet infusions got me to 58K and my 3 way bypass on 3/6/2020

was successful. Checked out 6 days later with a count of 6K. That was 18mos ago and never

went back to a hematologist. Bleeding for me is simply not an issue. Simply stated - This is my

"normal" count. I have had this low count for over 30yrs and my doctor agrees. This may not

be the case for everyone but for me -bleeding is not and issue. Happy in New York @ 62.

[Loftyc in reply to Dahle2424]

Thanks Dahle

[Robert1959]

HiI would like to pass on my experience on NPlate in case it may be of some help.

When I had ITP, I was classed as having refractory ITP as I did not responded to numerous treatments (Prednisone, IVIG, Cyclosporine, Rituximab, Dapsone and Dexmethasone) and bottomed out at the magical 0 count.

My specialist then got me onto the NPlate trial which initially for the 5 weekly doses, proved ineffective but, as I was later to find, just took time to accumulate into my system. I had a number of bone marrow tests done during this time to see what effect it was having on my platelet production and then at week 5 it showed that it was having an effect. By week 6 my count had finally risen into double digits and the the roller coaster of incredible results started.

NPlate is incredibly effective and so you have to manage the dosage amount very carefully as the slightest amount (and these are tiny doses measured in micrograms) can send your platelet levels sky-rocketing (well it did for me). A couple of times my count reached 1.1M (but thankfully without any nasty effects) and then I had to take a quarter of a tablet of aspirin to bring the levels down again. After many months of riding this roller coaster, my ITP just stopped one day and has never come back after 7 years without any treatments - I am not sure if this was from the Nplate or not and they said that they will never know.

The only side-effect I experience whilst on NPlate was having a constant, mild headache (lie a mild hangover) but this was a small price to pay to beat my ITP.

I wish you the best of luck with your treatment.

Regards Rob

[Loftyc in reply to Robert1959]

Thanks Rob that gives me hope

[DevonMaid1]

Hi, I have been on nPlate for five months; I self inject weekly, it certainly is a small amount which you have to be careful with. It certainly has worked for me, platelets went from 17 and currently 114.

Side effects has been certainly an issue for me, headaches are just as previously mentioned hangover type headache. This lasts for 4-6 days, I have had a dose reduction due to this as they had got pretty crippling and the platelet drop due to the dose reduction was not too bad. Also, joint pain. This is another known side effect, I take paracetamol or co-codemol daily to overcome help deal with this.

Good luck x

[Loftyc in reply to DevonMaid1]

Thank you am expecting some side effects good to know what others have experienced

[swheels]

Hi I’m in the UK, started Nplate around March, had excellent results. Platelets have been up and down but was told it’s to be expected at the start. I started at a count of 14. With having weekly blood count checks and a dose of Nplate, biggest count has been 397. Lowest 40. I was before whatever triggered the lapse, I was running between 20-40. I think people respond individually so you need to just try it for yourself. I was treated with short doses of prednisolone before but was no longer holding the platelets up and out of the two, I’ve had less side effects from the Nplate. I’ve had thinning of my hair but I can cope with that, at some point we’re hoping to get to a once a month shot so plenty of time for hair grow back. Good luck

[Loftyc in reply to swheels]

Great it working fo you I hope you get a remission soon

[DoNorth]

I had itp earlier this year and it cleared up quickly on Ibrutinib which I had taken for CLL, but had become resistant to as a CLL drug. I took a reduced dose of 140mg per day and platelets are around 80

[itplassne]

I've been on Romiplostim (N Plate) for just over 3 months, on incrementing doses, and my platelets now seem to be stabilising around 100 (on 8 micrograms per kilo) having come up from a count of 4.So far, I haven't noticed any side effects, but on the plus side I feel "well" and am experiencing less fatigue than before I started Romiplostim.

I hope it works for you 🙂

[Loftyc in reply to itplassne]

That sounds great would love to feel normal again

[Bowiemolly]

Been on N plate about 6 months, works for me ! Had to tweak my dose but generally good on it. Mild headache as mentioned. Recommend!

[Loftyc in reply to Bowiemolly]

Thank you glad it’s working for you

[thaliag]

yes fortunately I did it !!!!!! I was in the same dilemma after cerebral hemorrhage from thrombocytopenic purpura and now I am 3 years with n plate, 100 only that I fell a little from the vaccine but again with a higher dose n plate I am 95

[Loftyc in reply to thaliag]

That’s great thank you

[bruiser2017]

Hi Loftyc, I had rituximab back in 2017 and the one 4 week course took me from 5 to 92 and put me in remission for 19 months. Started Nplate (Romiplostim) beginning of 2019 with minimum dose, at first once a week and then fluctuated between 1 to 3 weeks - still minimum dose. Despite the list of side effects I seem to have missed all of them and I am currently at month 13 in remission with levels hovering around 170 - 190+, so for me Romi has been the answer thus far to the ITP effect on my body.Every one is different and will no doubt have a whole range of experiences from Nplate (Romi) but for me it has saved me from the previous weekly visits to Dracula's daughters (phlebotomists)!

I wish all the best in your journey with ITP and hope Nplate works for you. Take care.

Hawkwing

[Loftyc in reply to bruiser2017]

Wow that’s great would love to skip those weekly blood sucking visits thanks for sharing gives me great hope

[Mauve123]

Hi. You and I are in a similar situation. I am at present on 7mg prednisone but my Hemo has suggested I try Romiplostim/Nplate and like you I am researching as to the best route. My platelets are 75 at present but I want to come off the steroids. By the answers you have received it is an individual response to the drug. I am considering trying it though if there is a chance I could get into remission. I hope things work out for you. It certainly is a journey.

[Loftyc in reply to Mauve123]

Yes it sure is. Hope you too find something that works. Steroids have their place probably saved my life but they wear you down after awhile. Post and let me know if you try it. I will do the same. Let’s hope we both get our remission soon 🤞

[rjsmyth]

Been on Nplate since it became available in the uk in 2011. I have refractory ITP and nothing works and I mean nothing as I have had all the alternative treatments except Nplate which I have been injecting weekly at home. Two phials keeps my count in the safe region of 50-100. No headaches but do get manageable joint pain and feel tired and strangely irritable/depressed the day following the injection. I only see the haematologist 12 weekly as I am very stable on Nplate. Once on Nplate for a period it can be dangerous to suddenly stop taking it as your count can plunge to lower than when you first start using Nplate as I once found out.

[Loftyc]

Thanks soo much 12 weekly hemo visits would be fantastic

[HOLCOTT]

Hello Loftyc I tried Rituximab a few years ago. Fir 4 weeks. It didn't raise my platelets.

6 months ago I tried Romiplostin (because it wasn't a good idea to take immunosuppresant because of coronavirus) I am still on it weekly and we are tweaking the dose but it has:raised my platelets which are now settling above 50 on 500mg weekly. platelets dived each time I had the covid vaccine. So it's taken 6 months and I hope it's settled....so that I can bring it home and inject here soon. ...highest platelets 128, lowest 22, started on 11. Dose increased from 125 to 500......

No side effects whatsoever!

[Loftyc]

Thank you and good luck