Symptoms

I have a general question, after reading the boards for a number of months and following people's stories it seems to me that some people with ITP seem to be more prone to bleeding than others.Is this correct?

Some seem to have really low counts and not have any symptoms.

Yep it's true - it varies from person to person.

I can usually tell my count has dropped as i come out in petechiae - but my last count was 32 and i haven't had any (just bruises from when i've knocked into things) but by the same token i've come out in petechiae with counts in the 90s.

My only physical trigger seems to be petehciae and that usually does not show until my count is under 10. Anything under 5 and I seem to start to bruise a bit too. But I have never had any other bleeding other than surface.

There are variables. Some people have platelet function problems as well as low counts (common with ITP) which can lead to more symptoms. Some people have platelet microparticles which help protect them from symptoms.

Most agree that few symptoms are a good thing!

Thanks all for your answers.

What I am trying to understand is I didn,t have any symptoms when I first got ITP, no bruises, no petehciae but a really bad bleeding episode. This was very traumatic for me and it worries me that this could happen again.

I am not complaining about the lack of symptoms I am more worried that because this happened am I more likely to have this happen again.
Sandi, I already know you are going to say don't worry about this but it, may never happen it is just something that I can't stop worrying about. I don't even think of dying from ITP it's just this bleeding thing that worries me.

Milly,
People on the board talk about symptoms in two main ways. I think this is all from our personal experiences, not from research data.

Some talk about being bleeders or not being bleeders, and if you are a bleeder you need to be more careful and treat if possible. People who are bleeders tend to have oral, anal, or other types of active bleeding and what they call 'wet purpura', blood blisters.

Other discussions have described that over time, some of us seem to bleed and bruise less despite having the same low counts. We speculate that our few platelets are stickier and newer and more effective, compensating for having so few.

I don't know which if either of these perspectives is accurate. We do have some people who have had more than one serious bleed. I think it might be safest to assume if you have had one serious bleed you might be more at risk of having another, but I don't know of any data to support this.
Erica

Milly:

I wouldn't say not to worry about a bleeding episode. But what you have on your side now is that you are aware of ITP, and you are being monitored and treated, if necessary. You didn't have that at the beginning. All of those things combined can give you a bit more comfort.

I only started out with the bruising. In retrospect I have had a problem with bruising for many years. I did have some petechiea in the beginning but no bleeding. Until the first round of Rituxan quit working. Then it was only a nose bleed, but it lasted for days. Not a constant flow, that stopped in about 1/2 hour, but there was blood there for days. Of one thing I am sure about ITP. Everyone is different! Are there other diseases/disorders out there that are THAT different for everyone?

Thanks all for your answers, this is something I didn't want to discuss with my family I think it would just upset them.
I think the reason this worries me is that it has happened twice the first time was for about three days the second was two days (that was about six months after the first). The first time I was having blood transfusions while the hospital was waiting for platelets, soon as I had the platelets it was under control, that was the only time I thought I might die (it was really bad).

The second I had tranxamic acid and this worked after about two days.

Maybe this worry is just because this is the first time I have been without treatment (pred was a bit of a comfort in that respect).
I do appreciate the honest answers though so thanks again.

At my dx, bruising was the main symptom. Fatigue and depression followed as time went on. Never had any bleeding issues or petechiea. Now when I feel tired/fatigued I get it checked.