Platelet Count

[ITP_September_2014]

Friday, August 26th my count was 29. I didn't receive my Nplate shot for two weeks which caused my count to drop significantly.

[sailor]

Hi there. I do not know where you live or who you are being treated by, but in these modern times, spleen removal is not recommended without a screening to check if the spleen is the cause off the platelet destruction. There are a few centers around the UK that will undertake this procedure. There is no guarantee that having a major operation will have the desired effect of increasing the platelet count. Whilst 29 may be considered by some to be low, having lived on a platelet count of 10 for over 10 years and taking no medications, it can be achieved by many. It all depends on the individual.

Look at the ITP web site (linked above) and read about the treatments for ITP which has been copied by the experts in ITP from the UK and the USA. It will also provide you with a list of the centers around the UK where specialists can be found. Look under forum for the list.

Keep smiling, be positive. You can live with ITP.

[ITP_September_2014 in reply to sailor]

Thank you for the positive feed back. I'm located in NYC. I am scheduled to get the spleen scan at St barts in London. I'm still not sure what I'll do if it is my spleen. I want to consider all my options first. I'm hearing people are living without treatment with a count of 10. I usually am 4 -17 without medication. I'm currently 29 because I still had nplate left over in my system.

[sailor in reply to ITP_September_2014]

I take it NYC is New York County so why St.Barts? Either way you are correct not to be pushed into anything without careful consideration and discussion.

[ITP_September_2014 in reply to sailor]

New York City.

They don't offer this test in the states.

[Robert1959]

When I was on NPlate I found was that my count would still rise the following week even if I didn't have a shot and so I had to watch out for the cumulative effect if a had a shot each week. This could be quite dramatic sometimes and I would go from 150 up to 400 and then without a shot the next week go up to 600. But I would then lose 150 per week back down if I didn't have any further shots and start the same cycle again

[ITP_September_2014 in reply to Robert1959]

With nplate i'll go up to a 400+ platelet count, but once i hit a week and a half without medication I drop back down to under 20.

[Robert1959]

Do you have any side effects from the NPlate? I used to have a constant headache (much like a mild hangover) but nothing else. It was far better than taking Prednisone which I think everyone would agree had some evil side effects.

What dosage amount (in mcg/kg) sends you from <20 to over 400? I initially got up to 8mcg/kg before the NPlate had any effect (that took 5 weeks) but once I settled into a pattern, I used to get just 2mcg/kg every 2nd or 3rd week to keep me above 150. It was such a small dose (0.18mls) but would have such a dramatic effect on my platelet production.

[ITP_September_2014 in reply to Robert1959]

I get headaches with MMF which is the other drug i've been on for the past two months. MMF hasn't made a difference in my counts yet but I'm still hopeful that will change around month 3.

Regarding mcg/kg, I'm not sure?

[Robert1959]

The NPlate dosage is determined on your weight in kilograms (kgs) multiplied by the amount of NPlate powder in micrograms (mcg). Being in the USA you probably don't use the metric system much but you might like to in order to understand the amount of NPlate you are given. Generally they start you off on a 1mcg/kg amount of NPlate so if you weigh 90kgs (as I do) , you are given 90mcgs of powder which is then added to water for the injection. A 2mcg/kg amount for me was 180mcg, etc, etc. The maximum allowable dose of NPlate is 10mcg/kg. My highest dose amount was 8mcg/kg which equaled 720mcg but towards the end of my ITP I was given only 2mcg/kg every 3-4 weeks.

You mentioned in one of your other posts that your dosage is 250 which would be 250mcg and it would be worth you knowing what mcg/kg level you are up to so you can monitor your progress - 250mcg for one person is not the same dose for another person if they are different weights.

I found it better to know the mcg/kg amount rather than the total mcg amount and this is what the manufacture specifies and the doctors use to determine the dose you receive.

I hope that this is not to confusing.