What's Normal?

Hi my name is Dan, and i was diagnosed with ITP in October 2011. I was living what i thought was a pretty normal life, i had been a little tired but i put that down to our summer. (i live in queensland, Australia) Then in the space of four days i got around 40 bruises over my legs and arms and got a rash on my feet. This started on a tuesday, on friday i went to my GP and she got me to give her a urine sample and sent me to my local hospital for a blood test. I did that and went back to work, my GP rang me at work and told me to get up to the hospital as my platelet count was 6000.
I had no idea what this meant but of course i went straight to the hospital. The doctors got me admitted and to make a long story short over the next four days i was given 100mg per day of predisone and immunoglbulins once a day and my platlets were up to 52000 the day i left hospital.
I then stayed 100mg per day for a month then tapered down by 10mg a week til i hit 10mg then i went to 5mg for a week, the 2.5mg for a week then 1mg for four days and then stopped predisone all together. At my highest my platelets went to 264000 the i got a virus and they dropped to 256000. I have been off the predisone since the 5th of February, my blood test on the 7th showed my platelets had dropped by 48000 putting my level at 208000. I had a blood test yesterday that showed they had dropped a further 7000. Is this normal or should i be worried they are going to keep dropping?

Hi Dan, My name is Sonya, I just joined PDSA today, I have chronic ITP since Nov 2004 and I am only 28...so as I have it over 7 years and I can tell you living with ITP you will notice your platelets going up and down all the time, depending on how you react to certain treatments... I was on predisone for a yr at the start, I became steoroid dependent, then had spleen out, and lots more treatments after...you learn to know your body over time (I can nearly tell now what my count is, the nurses do laugh) when mine are below 10000, I always bruise loads and my legs also show the most, they are covered in the rash/red dots, but all I can say is speak to your doctor more to be clearer...you can only take it a day at a time, try think v positive, and do not let ITP take u over, I am loving this website as I am from Ireland and in my area I am one of the most chronic ITP patients they know, it is so great to speak to others like me, made my day , keep positive

Dan:

Fluctuations in counts are normal. They go up and down all the time. I wouldn't assume that drops like that mean they will continue to drop. Tomorrow they could go up 10,000 but you'd never know it if you didn't get a count that day. You still have a 'normal' count - not time to worry yet!

Thank you so much for your replies, i seem to get more info from this website than the doctors. I went back to the hospital yesterday and the doctor i have been seeing since this started has now moved to a different hospital. The doctor didnt seemed concerned and has asked me to go for a blood test on the 9th of March and go back to my GP for the results. So i guess ill just wait and see what happens with that count. When you came off the predisone did you feel tired and a little teary?

Oh yes Dan, coming off pred can be very tough including tired and teary.

I agree, the info here is better than we often get from our doctors!
Erica

I wouldn't be surprised if there is significant fluctuations even during the day. I once had to get blood drawn by three different doctors on the same day (before ITP). I was intrigued by the tests that crossed over among the three doctors and how much they changed up and down. Especially cholesterol, there was a 65 point swing between highest and lowest.

I love your attitude Sonyam. - God bless you. I am sure you will be just fine. My story is similar to yours. I have it since April 2006. I am happy.

A little brief about my story
I have ITP since April 2006. I am 34 years old .

I started with a count of 2000 Platelets.
1. Was on cortisteriods for 6 weeks - It failed
2. Then underwent splenectomy in July 2006 – SUPPER SUCCESSFUL
3. Lead an awesome life until Jan 2012 – I had NO PROBLEMS for 5.5 years. God is great.
4. Now again back in the hospital with count of 4000 platelets (nose bleed) and on DEXAMETASONE , AZORAN and RITUXIAN
5. I will undergo my 4th Rituxian IV on 28th Feb 2012. and then wait and watch for the results.
I will live another 50 years minimum. With ITP . I will keep writing. RITUXIAN HAS TO WORK ON ME.
Besides all this I drink, wheat grass juice, Papaya leaf juice, beetroot juice, celery leaf juice and I am trying my best to take care of my health.
Dear ITP friends – please write to me.
LIFE IS TOO PRECIOUS. WE ITP PATIENTS ARE THE HAPPIEST PEOPLE ALIVE. OUT OF ALL THE DREADFUL DISEASES IN THE WORLD. GOD HAS OPTED TO GIVE US THE EASIEST, PAIN FREE DISEASE IN THE WORLD. THANK YOU GOD.

I love YOUR attitude seema09

ITP diagnosis in November 2007 (actually one of the most memorable Thanksgivings ever, got to share my awesome friends and family with the staff at the hospital. I am truly Blessed)

Had a count of 4k going in.
Prednisone was a fail
IVIg worked but was short lived
WhinRho would keep me at about 80k for a week or two
Then out of the blue my count just froze at 30k then slowly started to climb
Had a four year remission where it kept climbing to about 130k
Got a nasty virus for about three weeks and when I finally turned the corner I could tell my platelets had dropped.
Went to the doc and confirmed I was at 11k
After one week of being back on Prednisone I am at 219k and tapering off - praying my counts hold at a safe level once I am off the stuff.
I pray for each and every one of you.

thanks Bigdave

Hey all,

I am really loving this site. I was recently diagnosed myself and it has been a roller coaster. Thank you all for your support and stories. Good luck Dan!