What is the highest count anyone has had? As of this morning mine are at 1400.

[NickyD]

Today I had my bloods done and my count is 1400. Has anyone had a count this high? I had an injection of Romiplostim on Monday 10 days ago of 5mcg/kg when my count was 119, since then it has gone to 361, 950 and this morning it was 1400. At this level what are the side effects that I can expect? My steroids were stopped on Monday 3 days ago.

[AnthonyHeard Administrator ITP Support Association]

Hello Nicky, I will set up a poll question to ask folk .... What is the highest. Level that they have seen their platelets go to . It will be interesting to see what other ITP people have to say.

[NickyD]

Thanks Anthony

My count just goes up and down like a bouncing ball. It will be good to see what others say.

Nicky

[bjcavite]

I will know mine on Feb 27 when I have my next cbc draw. Am on the weaning period of Prednisone at 2.5 tabs x 10mg daily dosage; schedule for a half tab drop (to 20mg/day) starting March 1. My highest after IVIG was 315 (Dec. 31, 2013), but it dropped a sudden dive 2-weeks after to 179. Took Papaya Leaf extract and this rose to 220 (Jan 29, 2014); continued on papaya extract and 204 two weeks thereafter. Still on Papaya leaf extract at about 3-days per week dosage. Already excited to know what would be the result.

[bjcavite in reply to bjcavite]

Result of my CBC today, Feb. 27, 2014: Platelet count of 209.

[NickyD in reply to bjcavite]

the body is certainly not predictable .....

[mahendra_nagraj in reply to bjcavite]

I have joined the forum recently and am searching for alternate therapy optoins and hence a query to you. Are you still sufferring from IPT? if yes, did Papaya leaf extract help you? How long did you continue with it? Did you stop all other meds?

My wife is on Nplate and we want to look for alternate therapy options.

[Suntied in reply to bjcavite]

Prefixing worked for me about two months then I was hospitalized at 4000 they gave me blood infusion the IVG dangerous stuff didn't work then went to Rituxan 4 infusions didn't work. Nplate is only thing that works for me it was once a week causes me fatigue for about 3 days then feel great. Finally it kicked in about 2 months later lasts me about 3 to 4 weeks then I go low gotta get another shot.

[NickyD]

Hi I have had a count of 1400, do not worry about it. There are no side effects. My worry was that with all those platelets in my system my blood must have been thicker so I did not do anything to exert myself. My consultant said not to worry all was well, but I still took it easy just in case. Nicky

[bjcavite in reply to NickyD]

Hi. That's what also my hematologist told me. Nothing to worry since my platelet is on the normal range. I'm new to this (diagnosed of having ITP only on Dec 20, 2013) and I'm still hopeful I could get my normal immune system function back though proper diet management. Done some readings on this "leaky gut" thing and I guess reversal of this autoimmune disorder could be achieved through proper management of my digestive system. Am shying away from animal proteins and I maintained it that way for a month now.

Btw, had my cbc done this morning; result, Platelet of 209 and I'm glad that I was able to maintain it that high.

Thanks for giving some spirit boosting assurance.

[NickyD in reply to bjcavite]

Wow, you have not had ITP for long, welcome to the club. Diet will make you feel better because you are eating well but it will not affect your ITP. I was told to take an asprin when my count was 1400 but as it came down very quickly I had to stop taking them. 209 is a good count. Take care. Nicky

[Suntied]

On Nplate highest was 423000 on cd e then after that Nplate takes it in 200000 drops after 3 weeks then if I am to high to get shot at 3 weeks then by 4 week below 50000 some times really low been at 4000. Have had ITP for 10 months been roller coaster tried alot nothings worked but NPlate

[NickyD]

My lowest was zero and highest 1,400,000. It is a roller coaster, but hang on in there. Nicky

[ITPAffecty]

This post is interesting. Wish we had option of sharing our platelets without blood transfusion. Highest count I had since my ITP was diagnosed was just 90k with IVIG. Now starting Revolade and hoping I could go above 100k this time atleast.