have your symptoms changed since diagnosis?

I'd be interested to know if people have noticed any change in their symptoms since they were first diagnosed - whether it's been a worsening or improvement of the same symptoms, or the appearance of other ones? If so, have your doctors ever commented on it?

My last count was 11, and I'd been expecting around 20 (the previous count a month before) because I'd had just one small bruise in the intervening time (despite a very uncomfortable journey across Europe with lots of opportunities for knocks!). I had a bit of bruising from my blood test, but it cleared after a day. Previously I would get quite a few more bruises under 20.

Another odd thing is that I don't get any peticchiae now. On diagnosis I had bad peticchiae on my hands and stomach.

As a possible new symptom, I do seem to get a bit of dizziness now with low counts (tho really not sure if this is the ITP or due to nasal congestion!).

On the one hand I am glad some of the symptoms have lessened; on the other hand they were quite a useful indicator of counts. I was thinking that if I didn't know already that I had ITP, at the moment it wouldn't occur to me that anything was wrong.

When I was first coming off of prednisone and my platelets dropped rapidly, I had petechiae and blood blisters in my mouth (count was 11K).

18 months later, my count dropped to 3K with a virus, but a just had the smallest hint of petechiae on my legs.

I've since had counts of 20K with no symptoms at all. Never had a nosebleed, and haven't had blood blisters since that first time. I like to think when our bodies can, they adjust to the lower platelets.

That's a good question!... I'm curious to know myself..I'm still very new to all this.

All I can say is that I could never tell what my counts were by the symptoms. The only thing that was ever consistent were spontaneous black bruises under 10k. I've had purpura at 50k and was shocked to find out my counts were that high.

My theory is that some of us also have antibodies that affect platelet function and those come and go as well as the anti-platelet antibodies and the ones that affect production. There can be many things going on at once so you can't rely on the same thing all the time.

rigth after I was diagonised the bruising got much much worse. With my count up now though I only get bruises from the pokes Never had a bleeding issue, other than the female one! Only had a little of the peticchiae on my foot once. I have noticed the extreme tiredness and fatigue getting worse though even with my counts up in the 130's.

Thanks for the replies. All very interesting. There's so much that is not understood about this condition. If it wasn't such a pain to manage, then it would be quite interesting...!

I guess even people without ITP vary a lot in the degree to which they bruise, so something else is going on.

I've always thought peticchiae are a bit mysterious. Ok, so they are supposed to be a form of superficial bleeding into the skin, but where and when they appear seems a bit random.

Early on, my kid consistently had petechiae and bruising, and the worse it looked, the lower the count. She even got them in the shape of her jeans seams over her buttocks. Over time, she bruised less and had less petechiae development, even at low counts. She gets finely sprinkled petechiae on her ankles sometimes, even with really good counts. She was always our nosebleed kid, so nosebleeds aren't indicative of low counts in her. (But often indicate she's fighting illness, which then lowers the count sometimes.) The only usually sure-fire sign of a drop in my kid, like Sandi mentioned, is the dark black bruises. She gets a cobalt-to-black liquid looking bruise occasionally, especially around joints. If she gets those, especially with no explanatory trauma, and especially if they don't hurt when pressed (I know - sounds sadistic to press on your kid's bruise), we get a cbc. Even then, sometimes the count is great. We also found vitamin C held back some of the bruising, petechiae, and bleeding, but can't say it helped the count, and teens are not known for vitamin intake compliance, so we aren't as consistent as we should be. I generally think the body adjusts in some folks to these lower counts, and somehow the vessels become a bit more resilient. I certainly think that has happened in my kid.
Norma

Norma - my husband used to press on my bruises too. That was his way to check on me. He'd just reach over and poke me and if I said "ouch", he'd say "okay" and was satisfied that it wasn't an ITP bruise.

I bruised a lot when my could was around 70k.... I'm at 40k now and I haven't been bruising hardly at all! When my count was higher, I had lots of bruises... so I was shocked to hear my count had dropped after the bruising seemed to stop! This is really confusing to me ... also .... my platelet count was 70k in Feb, 50k in March, and now is 40k .... but I haven't been dropping in the past month... seems to have just stabilized... That doesn't make sense to me! I'm not being treated yet and my count isn't going down. How weird...

Lorna, it just sounds as though you have stabilised at 40. That's not weird, that's just ITP.