To those of you on NPlate, how often is a normal injection, how much and what is the goal set by your doctor as far as count?

[rsmonte]

My husband was diagnosed in May. Nothing but NPlate raises hiis count. Rituxan, IVIG, platelet transfusions and prednisone were of no real help. I keep reading everyones comments about their count being 20,000 to 50,000 but his Dr keeps giving injections and wants him about 300,000 because about every 10 days it drops to between 17,000 and 60,000. Last week it was 635,000 and 5 days later 52,000. Very confusing! Do many of you not take a treatment and just live with very low counts? Scares me what NPlate might cause down the road and wonder how long can someone stay on this treatment? Trying to get a balance on how often to get the treatment is so frustrating.

[Hidden]

I had a weekly nplate injection to keep my count between 50 and 70.

[rsmonte in reply to Hidden]

Thanks for your reply. Do you mind sharing if you get 250 weekly? Or lower? The weekly visits are so exhausting for him, so they are trying to find the right dose so he only has to go every two weeks.

[scaryteacher]

My count used to be between 60-80k, and over the past 5 years keeps dropping at times to about 19k. I have no treatment except perhaps a dose of steroids (as I will do next week for a week as I have dental treatment coming up and the dentist would prefer I didn't bleed everywhere). I have had steroids perhaps 4 times (including next week) in 18 years.

Best advice I have had is from Sailor on here, who said don't get hung up about your count; concentrate on how you feel. If I'm tired, and my rash gets worse, then I go and have a blood test and see what the result is. Often, I'm feeling really good and then the doc rings and says my count is about 19, and then I feel odd, but only after they've told me that!

[rsmonte in reply to scaryteacher]

Thanks so much for your reply. We are struggling as to why his dr doesnt seem to think a lower count is fine. She said that is 'old' information and that higher counts are fine so that treatments can we stretched out and not have to be done weekly. So confusing!

[forbes84]

Hi there, ive had itp for 3 years now, lots os prednisone was prescribed for the first year and a half,the next course of action was nplate, we decided to leave all the drugs and see how it goes as my hematologist warned about the length of time I would have to be treated and the fact that they weren't sure of the effects later on in life. I've looked into many natural remedies including papaya extract, I now take that everyday and just really take care of myself my platelets are at their highest ever of 90,000 but usually hang around 40 and drop rapidly with constant infections. It depends on how your husband feels and how low his counts are, do they know the cause of the illness?because only recently they have discovered I have 2 more underlying problems which I think is all connected to the itp. By looking after the other problems the itp seems to have calmed down! Hope that was some use to you.

[rsmonte in reply to forbes84]

Hi. Thanks for your reply. I do worry about the affects this might have down the road. But am also too scared to think if he stops treatment that his count would be super low. When first diagnosed he was at 7,000 then 5,000 so I am not sure his count would get out of the high risk zone without the nplate. They do not know the cause. They say ITP has an unknown cause. He had hodgkins lymphoma in 1990, non-hodgkins as well as autoimmune hemolytic anemia in 2001, where his red blood cells were being destroyed by his spleen, so he had that removed. Then in 2009 he was diagnosed with MDS (myelodysplatic syndrome). He beat all of that and then boom, along comes ITP. He had biopsies a few months ago to check on all of these and everything was negative. Are your underlying issues similar? Glad to hear your ITP has calmed down, that must be such a relief for you!

[rjsmyth]

I have been on Nplate for over a year now. Weekly injections gives me a count of around 65.

I believe the manufacturer recommends weekly injection to achieve a count of 50 or slightly greater. You need to be given the minimum amount of Nplate to achieve this count and stability.

Nplate is not supposed to get you a normal count indeed the danger with having a high count can be clotting.

Doctors seem to like to string out the injections to 10days/14days etc but my personal experience of this is that it does not work and the weekly injection is the way to go. Whilst having 10 day injections my count fluctuated too much.

I suspect some of the reason for stretching out the intervals is the high cost of the treatment. A single 250mg phial of Nplate is around £500 although I believe the NHS gets a discount from Amgen.

[rsmonte in reply to rjsmyth]

Thanks so much for your reply. We are struggling as to why his dr doesnt seem to think a lower count is fine. She said that is 'old' information and that higher counts are fine so that treatments can be stretched out and not have to be done weekly. So confusing!

[salmagal]

Hi I was on Nplate for nearly a year was injecting every week with a dose of 400 on some occasions my count went up over 500 and still had to inject I then developed periphial neurophy in my feet so was taken of Nplate July 25th my count has been fluctuating between 60 and 45 since so no meds since it's all such a roller coaster hope you maintain a steady balance good luck

[rsmonte in reply to salmagal]

Thanks for your reply. Why would they give you injections when your count was already high? That doesnt seem right. I read quite a few replies where people chose to stop treatment. We are just nervous that it will go as low as when he first got sick, which was 7,000. Best wishes to you as well!

[Diamondqueen]

Hi I have had ITP now for 7 years and like your husband have tried everything even had my spleen removed. Nplate injections fluctuate with me, my blood count is sometimes as low as 3 the next week they are 950, I do not get my injections when my blood count is over 450 and then the next week my blood count drops to 9 or under and they have to give me the injection again. I have tried multi vitamins and fish oil like some people have said they take and told my consultant who disagreed with that, as he said its prob the meds they are on that is working. There is no explanation for the ITP. I work part time and every day I am exhausted after work, I have to push myself to look after my 3 children and keep on top of my house hold chores. My consultant said that once they stabilize me on the correct dose every week they will teach me myself but as of yet, and it is 5 months I have had these injections, my count has never been the same from 1 week till the next and I still have to travel every week to hospital.

[rsmonte in reply to Diamondqueen]

Thanks for your reply. Your situation seems to be very similar to my husbands...no treatment if already high and never the same or close. He is also fatigued. I hope you find some type of stability soon!

[Hidden]

The instructions from the manufacturer are here at this link. You could maybe print it off and take it to the doctor to show that it says when the count is over 150 for two weeks the dose should be reduced and when over 250 for just one week, the dose should be withheld.

Also the drug should not be given at all to anyone with myelodysplastic syndrome. It clearly says so in the warnings.

medicines.org.uk/emc/medici...

[4Ujustkel in reply to Hidden]

my son has received nplate every week for five weeks now last week ct was 91,000 and this week 116,000 kept injection amount the same both weeks at 300.

[tip-3]

I fear the same thing you do and have been receiving Nplate for 6 weeks now. The nurses told me my body was reacting very well to same; and the doctor told me I don't look as bad as some of the people in there ... well I wanted to say then what am I doing in here .. but I didn't ... as I am fully aware there is cancer patients. I am going to ask for a compete printout of my counts each week and the mg. they were giving me for my own personal records; and ask if I could have a mild case of ITP as my body is reacting so well .... I feel your concern and I am getting frustrated going in there every week; but am grateful I know it could be worse but I want to get to the bottom of this and have my mind at rest so I can go forward as this kept me backwards for awhile due to my concerns. I wish you and your husbasnd the best of luck and hope you can discontinue this treatment as I plan to .....

[Suntied]

I have been on Plate for 18 months it keeps my numbers up and down mostly in safe levels but today I get a notice from Humana that they are denying my shot. I Came into this at 12000 then 4000 so worried so will go to my Dr so he can get a notice into them to see if they will start it up again.

[Kyriak51]

I started Nplate after I failed 5 days of high dose dexamethasone, one IVig infusion, and 4 weekly IV infusions of rituxan. Nplate was approved in 2008 and many doctors were unfamiliar with this drug and did not follow the Nplate dosing guidelines. (nplate.com) I was started on 1 mcg/kg weekly injections it took 5 weeks increase my count from 6 to 20 thousand, dose increased to 2mcg/kg, platelets increased to 100K at which point my incompetent hematologist did not follow the Nplate guidelines and held the dose and my platelets droped to 20K. I was so sick and not thinking clearly that I didn’t question his actions. He should have given my dose and repeated the labs in one week and if count still at 100K, decrease the Nplate by 1 mcg/kg. I changed to a new hematologist who knew what he was doing.

The new guidelines are: for count of 400,000 give scheduled dose and repeat platelet count in one week; if the some DECREASE dose by 1 mcg/ kg. My next question: are your plate counts done by machine ( auto count) or manually ( a technician counts platelets under a microscope); manual counts vary depending on method used skill of technician and preparation of slide. At my previous hospital a machine count of 22K was reported as 115K a very large difference which could effect treatment decisions. Please ask your doctor how your platelets are counted and check out the Nplate web site......great information.

Hope this helps, contact me anytime we need to support each other. Be well Georgia