I'm a 38 year old male. Just diagnosed with itp. had the bone marrow biopsy. to prove the itp my hemotologist sent a sample of my blood for an antibody test. came back positive. first platelet count was 37,000. last platelet count was 26,000. and that's after a month on prednisone. gotta wonder what's next.

oh another thing.... how much do i really have to worry about this? (this is for the long time sufferers). right now i worry every time i get into a car what i should do if i get into even a monor fender bender if you know what i mean.

Hey, well it seems everyone has questions. OK this is what I have learned. 1) having a below normal count isn't the greatest of things but also not dangerous until it starts to dip down below 30,000. I start to worry when my count goes below 70,000. Now as per my hematologist a movement up or down in the platelet count of 10 or less means very little. Its when the count goes up or down at 15,000 or more to watch for. Another thing for new ppl to ITP, prednisone is the first line of defense for ITP. Also, there are drugs called WinRho (must RH Positive to take it in ur blood) and Rituxan. A last step is splenectomy (the removal of the spleen). This last step is not one to take lightly. At best it works to cure ITP 50-60% of the time and should be done before u reach 40 yrs old. Why, because after 40 yrs old the percentages drop to 2% success rate. Here is also a website for ITP:
www.pdsa.org
Any other questions please ask.

Lastly, ITP can be dangerous and can be lethal if it is not monitored and treated. Never do watchful waiting. In other words don't wait for ur ITP to do bad things. Most of the time there are little or no signs or symptoms when ur count drops. U should have your blood checked on a regular basis and see a hematologist on those regular basises. ITP is like any other disorder and disease, you treat it or things are most likely to occur. Is it something to worry about, well that depends on what ur platelet count is. If its dropping or falling below 50, 40, 30, 20 I'd say yea that something to worry about. But u should definitely speak to a hematologist for a more expert opinion. I am only speaking from my experience and from what I have learned. Always seek a doctor's advice if your unsure of anything. But never ever, do nothing at all with this disease. Be proactive is the best way to go.

I am so glad we found this site. Your info has been very helpful. We have been on the Lupus site and everyone there has shared their experiences and helped our daughter greatly, now her Lupus is in medicated remission but her Evans Syndrome/ AIHA PLUS ITP is flaring and her counts are all low. We were wondering about peoples experiences with plasmapheris and rituxin? She is 12 and her meds are taking a toll.
Thanks for your time

My experience with plasmapheris was so so. But that was for MS. I really don't know what it will do for Lupus. I wish I could say either way to ya about that. Pls ask ur doc. He/She will definitely be able to give u better advice. Now Rituxan I can give my opinion on - its works great for ITP. How old is ur daughter? Childhood ITP and Adult ITP are different in how it usually reacts in children and adults. Usually, and I say that with much caution, it goes away on its own and never comes back. Adult ITP is usually chronic and life long. If u have further questions pls ask. go to www.pdsa.org for more info on ITP.

Thankyou Talon331 Our daughter is 12 and her AIHA and ITP are of more concern to us right now than her Lupus.Her counts are critical low
We recently saw on our news a story of an MS patient in remission for 5 years after a stem cell transplant -apparently here in Canada they have had great remission rates with it. Good luck to you and yours and again thank you for your response

I was diagnosed with ITP in august of 2007.Right now im in good condition i believe ive done all of my follow up care with my hematologist and im supposedly fine.. What I do have a question about though is. Ive seen some of the people in the group still have problems with their ITP is it likely that I will have problems in the future with mine?? I know everybody is different... When I go to the doctor do I tell them that I was diagnosed and treated for ITP?? Some of my initial symptoms that eventually lead up to me finding out that I had ITP are kinda coming back..I dont if it is nerves and school or wat...but I am getting kind of nervous.

And I have been through plasmapheresis and the treatment is a long one once it is initiated..It took hours to get everything set up and going. I had to go through it twice(I guess my first 6 day treatment wasnt sufficient enough) but since eptember of 2007 I havent had any problems

I just got diagnosed with ITP on 3-4-08. My platelet level was a 3. I was in the hospital for 16 days and when I left the hospital it was A 50. I went on monday 3-24-08 and they were up to 95. I don't go back until 4-1-08. I am scared that they will drop and I want know it. How often should someone newly diagnosed have a cbc done? What should I be looking for if they drop? Thank you for your help!

Tia Our daughter gets her CBC done everyweek with a standing req at our local lab. If the counts are good every second week . Things to watch for are bruises, bleeding gums, nose bleeds. You can tell if your counts are low by checking your eyes- pull down your bottom of eyelid- red is good ,if its pink all is well, if white your platelets are low and you should see doc.
check with your Doc any concerns as soon as possible

bcnurseo4 Thank you for the info on Plasmapheris We were very interested in it and thought it maybe our ace in the hole if our daughters health dropped again. But it has since been explained to us her antibodies causing her problems are too heavy for the filter system, therefore are ace remains steroids as rituximub is not combat able for her either due to lupus comps and Evans probs. Thanks again for taking the time to explain

Wow thanks for the tip on the eyelids. I did not know that. I will be checking my eyes often now. I just checked and they are pink so I am hoping they stay that way. Thank you again.

Hi,
I was diagnosed with chronic ITP in 2006 when i had blood tests to find out why i wasnt falling pregnant, I got pregnant and since then they dropped or went back up, when i am not pregnant the ITP is fine, I am currently pregnant with #3 and am having blood tests every week to check the full blood count, the lowest is has got so far is 48, the heamotologist has said to me and my ob not to give any treatment like steroids unless they drop

My 5 year old was diagnosed with ITP on March 28th. Her platelets were at 7000 and went down as low as 1000 that night. She was given WinRho which brought it up to 14000 within 12 hours. 4 days later she was up to 69000. But this week she was at 46000. It is discouraging, but we were told that it could go up and down for awhile. I just worry about her getting hurt. Anyone out there found WinRho to be the answer? i really hope this is an acute case and she recovers quickly.

I have had ITP for 27 years now..I have had every treatment, every surgery, everything done. I just recently had to have hip replacement surgery due to taking prednisone for so many years. (it's very hard on the bones). I am currently not on meds, but just finished a clinical trial that (in my opinion) is a miracle drug. They are fast tracking it through the FDA, so if it becomes available and is given a name I will post it as I HIGHLY recommend it. I will never take prednisone again!!