Liong term ITP use and repsonses

Hello all:

I have not been following the discussion group much, mainly I fall into the older male group where chronic ITP is the issue.

Currently I am coming up to the end of my third year of N-plate treatment. My treatment routine is to go in every 5 weeks, get my blood tests, see the my Hematologist or more often lately nurse practitioner, and my injection of of N-plate. My counts are usually around 110, which is quite comforting. But I realize that the disease is still alive and functioning in my system.

After the injection, I go through the response of the high platelet peak production to the drop to a 110. I have had some blood treatment tests, and found my counts up around 280, so I wonder what the real peak is within a couple of days. But I normally go through periods of sleeplessness initially, to periods of having some energy ( I love that feeling), then down to low energy.

However lately, I just feel tired all the time and no energy. Plus I have been having more muscle pain then I had been feeling with the N-plate.

I am wondering if there are any other long term users of N-plate that have experienced the same thing. I hope it is not the N-plate, so I do not have to go through a search for a new treatment, since I am in the group that crashed on both prednisone and rituxin.

I am hoping it is being caused by something else.

Clem

Clem:

Some people have reported those side effects, so that is possible. You should mention it to your doctor though just in case something else is going on.

I am concerned about your counts.......

Nplate® (romiplostim) is used to try to keep your platelet count about 50,000 per microliter in order to lower the risk for bleeding. Nplate® (romiplostim) is not used to make your platelet count normal.


www.nplate.com/

I am also in the older (female) group with chronic ITP.
My count is below 110 (usually 90 - 109) but not on any treatment.
Why are you on Nplate with count of 110?

I think N-Plate is what gives him the count of 110.

Hi Sandi and Lindy,

Thanks for your responses.

My platelet counts at 110 is caused by the Nplate. When I started Nplate my counts were around 10 to 12 after prednisone and rituxin sent me in the wrong direction, plus making feel worse then my counts of 24. I do receive a double dose of Nplate ( I think it is 1750 mcg/l). Initially, I
I received it weekly, which got my counts up to get through 2 operations. Then after a short time I went to every 4 weeks which had my counts in the 80 to 90 range. I then had to skip an additional week which stretched things out to 5 weeks. And my counts have varied form 90 to 110.

I have always had the fatigue that goes with the ITP. But lately I had been concerned with the level of fatigue, which is is more.

Also recently, I have had to get several basal cell cancers removed form my face which goes with the blued eyed, blonde hair, fare skin, i was born with. I work with 2 other guys about the came age that have had the same problems.

I will try to get in to see my Hemo and go over this with him. I did not get the response I needed from his nurse practitioner last week.

Clem

I have found that my counts within a week would jump up into the 320 range. Then after 5 weeks it would drop anywhere from 90 to 130. Which means after the injection i have a peak and it gradually drops.

ON Nov 14 my test indicated my counts were at 132. I then received my N-Plate injection. Well I have been going through my yearly physical. As part of the physical is the usual blood testing. I had my blood sucking done on Nov. 26. I learned today my counts were 432. If you look at the peaking factor my counts may have been up in the 500 to 550 range. So how much do I worry about counts that high? What really is too high?

I see my Hemo on Dec. 19. I need to figure out if I just continue my every 5 week injections, do I spread my shots out to 7 or 8 weeks, or do I quit the injections and see what happens?

I keep hoping that N-plate may have gotten me into remission, I have heard that it has done that, but I have not read any postings from anyone who have actually experienced that event.

But I will have to base my decision on what my counts are in 2 weeks. So what is my winning number?

Clem

I had a similar problem. My counts were high enough, ie over 100 on testing so I cut down to using Nplate every three weeks and was still only doing a count every eight weeks as I had been doing and I really didn't know where I was. So I simply stopped using it and waited to see what happened thinking that I'd start it again when the bruises and petechiae showed up, but they didn't show. So I've not used it in several months. My count last week was 165. It was a shame that I had a cold then which may have put my count up so I still don't know where I really am.

Protocol with Nplate in the UK is if the count is over 150 two weeks running to lower the dose. And if it's over 250 at any time to withhold that dose. So for me, to be on the safe side, if my count is over 100 I don't want to use it.

My doctor has had several patients who appear to have been pushed into remission by Nplate. I say 'appear' because you never know if it would have happened anyway.

My counts have gradually been increasing with N-plate. I started with weekly shots at twice the normal dose. That dose at that time got my counts up to 120. Over time I have spread the dosage out to 3 weeks then 4 weeks, and now 5 weeks. Initially, the five week intervals kept my counts around 60 to 75. In the last 1.5 years my counts have been up to 132 after 5 weeks. But I have had a few blood tests for unrelated issues, and I those counts a week later were in around 300. Which means I have peak production after the shot an then decline. My test week gave a result of 432. Does this mean my counts were 600 or above the previous week ? I do not worry, but this makes me worry about the platelet counts forming.
Right now, I am starting to feel like my counts are rapidly dropping, based on the type of tiredness. I am trying to figure out what argument/discussion that I may need to have with my hematologist. I like everyone else want high counts, but I sure do not want a stroke.