Nplate - negative

Hi! I switched from promacta to nplate. With 75mg promacta I had an average count of 40-55k.
Since I weigh 180 lbs my initial nplate infusion was 1 mcg.
My platelet count has been going down from 120 > 83 > to 23. I got the bad news today re: the 23. My doctor increased the dosage to 2 mcg.
What can I say? I'm mildly distressed. I wanted to share and also know if others had a downward trend; and of course, does it reverse itself with a higher dose?
Thank you! Vega

Vega:

Not time to be distressed quite yet! It takes time to get the right dose and become stabilized, sometimes weeks or months. Until then ups and downs will occur.

Just wondering why you switched if Promacta was working?

Vega,
You are at early days from my experience.
Everyone is started off at the 1mcg/kg dose due to the potency of the NPlate. I did not respond until a 8mcg dose some 5 weeks after starting. I had been stuck at <5 when I jumped to 33 at week 6 and never went back after that although my numbers would jump all over the place (+/- 150-250 each week) until I finally stabilised some 5 months later and I discontinued the NPlate

Hi Sandi:
Thank you for your reply. I took promacta for about 2 1/2 years or so. Being very poor and on a fixed income, I received it for free. When I turned 66 I enrolled in Medicare Plan D. Still being very poor I could only afford a very inexpensive drug plan.
January 1966 I called Walgreen's specialty pharmacy for my monthly supply. I was transferred to the access program. I was told that I would have to spend $600 on drugs before I am eligible again. Shocked!! I had no idea this was coming. I am very poor - period. They mentioned applying to private foundations. - I was an outpatient at a hospital then. The heme social worker recommended I go for Medicaid. Medicare would cover 80% and Medicaid the remaining 20%. My doctor prescribed prednisone. Anticipating full coverage I switched doctors and signed back on with a fabulous hematologist from years ago. He continued prednisone while my medicaid application was in progress. Although I was not yet approved, he gave me my 1st nplate infusion. I was above Medicaid's minimum income level and I have to pay $61 for every month I am using medical services. You enroll month by month. I am relieved about the financial part but now but worry over the nplate counts. And, my the nurse at my hematologist's office asked if I want to go back to promacta. I declined. I get angry every time I think about what happened with promacta. I believe they a responsibility to inform me in advance about the $600.

Hi Robert:
Thanks!! I feel encouraged. I did not know that counts could be so erratic on nplate. Now my hope is gradual stabilization.
Wonderful that you have reached a healthy level!!
How often do you have infusions now?
Vega

Excuse me, Robert.
I meant do ask how many plate counts you have now -
Vega

Vega,

I don't take any medication at all these days. After 5 months on NPlate with my weekly counts jumping between 150-600, my ITP just suddenly stopped and my platelet count returned to 200 some 9 months ago now. I still have blood tests every 3 months but I consider myself so fortunate when I read about others and their long term battle with this illness.

Ahhh the money difference between Promacta and N-Plate has gotten it's share of people! That's a shame.

No, don't get worried yet. It just takes time to get the right dose sometimes.

I've had Itp 12 years now since I was18 promacta didn't work for me but nplate does me and nplate have a love hate relationship my first time on it I had pneumonia 5 times in 4 months shortly after that my platelets went into the 6-800 thousand range and had a stroke I was given too much medication and the dr was keeping me at a normal count 200 which you do not do on nplate luckily my new dr watches me carefully and won't do anything I'm not comfortable with. It is hard to find that dose that works for you when I first started it took 3-4 weeks to kick it be patient :)good luck

Hi Robert,
On Wednesday I had a whopping count of 160. Imagine! I was shocked!! My doctor wanted me to have another 2 mcg infusion to see where this is going.
Of course I don't really trust the 160 to stay. Who knows how many peaks and valleys are still ahead -
Vega

Vega
That it good news - you should be feeling 'normal' at that count. Do you have any side effects from the NPlate ie headache?
It will be interesting to see what a 2mcg dose does for you. Unfortunately it seems that everyone's experience with NPlate can be so different that it is hard to say. When I first was at the ~150 count I would get a 6mcg dose which would take me to ~400 (and the next week to ~600 without any dose) so on the next cycle when I was back down at ~150 we reduced the dose to 2mcg which was better. Then one time when I was back at 150 we decided not to re-dose. As I was consistently losing between 150-250 each week and had not had any NPlate for 5 weeks, I thought my count the next week would be very low but to my surprise it had risen to 190 and my ITP just disappeared.
I can certainly relate to your comment regarding the peaks and troughs - I felt at the time that there was no end in sight as I was just going up and down on the same cycle for months so hang in there as you just never know.
Robert