Who else has never experienced any bleeding?

So, I have had ITP for about 6 years. I was diagnosed during blood test at annual physical, with no preknowledge that I had a problem. I am a really pale person, and always bruised easily. I have never had any symptoms except pretty constant all over body bruising (finger print to baseball sized). I have never seen petichia, or had a nose bleed, or gum bleeds, or mouth blood blister although my count never rises above 32,000. I sometimes drop to around 20,000 and went to a low of 14,000 once. I treated initially with steroids, but dropped back to around 30,000 after stopping the 'roids. Is there anyone else out there who has had a similar road with ITP who has been living with this longer than I? Since I have never had a problem, I am sometimes tempted to stop paying for the lab work every few months and just wait to bleed... But then I worry about some crazy brain bleed or abdominal bleed happening if I dropped down too low without knowing, since I never have had any real symptoms beyond regular bruises...

Hi,
I relate to your story. Apart from 1 nose bleed, in 9 years my counts have hovered around 30, with no other issues. Other than the initial Prednisone, & IVIG at the time of the nose bleed, I am treatment free & still have my spleen.
I have a regular 3 monthly blood test (just to keep my family happy & my Dr. frustrated!)
Best wishes from Down Under,
mj

Minnesotadd:

If you are only having blood work every few months, it's possible to drop from 30k to 3k in a day, so you may not be catching low counts anyway. Not that I think you should have counts more often if this is working for you!

I didn't really have any bleeding symptoms until I dropped below 15.

minnesotadd,

My story is very similar to you. My ITP was found as a result of my annual physical. The initial search was for leukemia, but that has not shown up yet. I had no bleeding issues but my platelet counts were 20 to 44k. I still have not had a bleeding issue. I have had the mouth blisters a time or 2 when my count was in the 20k range. I am learning how my body reacts to low counts. I am on prednisone 20mg per day and I want off! I am going to try to get my hema/oncl to manage me like you are doing.

Keep me posted on how you are doing if you would. I would appreciate it!

Jeffrey

When I was diagnosed last feb it was because I woke up covered in petechia and bruises but at that point my count was at 2 and from what I'm reading it looks like most people drop pretty low before they experience bleeding.

Nosebleeds aren't always related to platelet counts. I've had serious nosebleeds, which have resulted in three ER visits and two nose-packings, but my platelets weren't all that low (for me) at the time. My hematologist was convinced something else was going on with the nosebleeds, and I now work very hard to prevent and limit nosebleeds, no matter what my platelet count is. I didn't have to pay attention to nose care for the first 10 years of my ITP, but I'm very conscious of it now. So far, I've been successful--I steam my nose, I use gel sprays and nasal gels, I NEVER pick my nose, I try not to use products that dry my nose out--like decongestants-- I also carry a little emergency nosebleed bag with me. In it is one of those swimmer noseplugs, a spray bottle of Afrin, and a sort of expandable pad that I can stuff into my nose if necessary. Last month at my physical therapy appointment (and my platelets were VERY high--300-400K!), my nose suddenly started to bleed, and I put on the noseplugs and continued with my appointment! When the nose calmed down some, I used the Afrin, which causes the capillaries to contract.

My platelets are usually in the 20-30K range, but my knee replacement in November got my liver all excited, and it stopped destroying my platelets--therefore I currently still have high numbers.