Recently Diagnosed

[tdavenport]

Hi! I was just diagnosed w ITP. My battle started about 3 months ago when I had a recurring sinus infection & root canal done. I was put on 5 different antibiotic, and just could get well. I had petechiae, over 40 blk & blue marks on my body, and blood blisters in my mouth. I ended up in the ER w a count of 5,000, had a platelet transfusion and have been tapering off steroids for past 5 weeks. My count at the high end was 300,000 (2 weeks after discharge) and has going down since. I am currently at 141,000. My hematologist doesn't seem very worried. I have had no testing other that weekly blood work. My question....what causes/test should my Dr. be looking at?

[Lynney11]

With a count of 141,000 I wouldn’t worry too much. Mine is currently 139,000 but I am taking a daily tablet to keep it there. The time to become concerned is if it drops to below 30,000. At that time I had a bone marrow biopsy taken, and an H Pylori test. Both showed nothing untoward, so it was decided that my low count is due to an auto immune condition, probably triggered by a brain operation I had in 2001. The condition wasn’t discovered until 8 years after the op when I had a routine blood test taken - my count had been going down steadily all that time but not below the level considered normal. My count then was 80,000 so I was monitored for a further 4 years when it dropped to 29,000. That’s when I stepped on the roller coaster that is ITP treatment! Good luck.

[Steve5563]

Hi and welcome to the club.

I wrote about my "introduction" to the world of ITP when I was also diagnosed on the 4th October when I woke up with blood blisters in my mouth. When admitted to A&E I had a count of 1000.

Like you I have been on steroids since then and am being slowly tapered off. I am currently on 25mg and at my last blood test ( 5th Dec ) my count was 219,000.

I have not had any tests other than blood tests and my Hemo just says that I have typical ITP ( whatever that means ).

My readings over the last 2 months have jumped around a lot, and as you read more on here you will learn that counts can vary a lot from day to day, so as long as you remain near to where you are I agree nothing to worry about yet.

I discovered another small blister in my mouth today and obviously started to worry, but as the day has gone on it gas faded, and I am hoping that I must have bitten my cheek over night, which I am prone to do.

I hate the not knowing about this "condition" and really want to get off the Pred so that I can either get onto a drug that will stabilise this thing, or find out what my "number" will be and then start to get back to "living" again

What is interesting reading Lynney11's post is that I underwent brain surgery in 2003 for a benign brain tumour ( meningioma )......Yeah I do pick the rare conditions me!!!!!!!

Take care and keep us posted.

Steve

[dede7 in reply to Steve5563]

I hear ya about the rare !!

[jjjamesholder]

A platelet count of 141,000 is close to normal. I am living normally with a 35,000 count. You have no problem at 141,000. Your hematologist is very correct.