Petechiae "rash" and thin skin?

I'm just wondering, I got diagnosed with itp 4 months ago. Steroid-treatments are not working, my counts were 4 last week and I am not in treatment at the moment. My hematologist has recommended splenectomy after christmas (removing the spleen is apparently standard 2nd-line treatment in Norway). Usually when I'm very low (1-3) I have petechiae in my face and quite a lot of petechiae and "ulcers" in my mouth, I don't have that now, so I've thought I might be at 5-6 perhaps.

But now I'm getting a lot of petechiae "rash" on my thighs and also a bit on my stomach and arms, I've not had that before. I find "new" symptoms a bit scary, but some of it looks like scratch marks, so I've comforted myself with the thought that perhaps my skin has simply become thinner and more sensitive to touch, after using prednisone and dexametasone (I've also noticed hair loss lately)? Any thoughts on that?

In my experience prednisone has caused thinning of the skin. I mostly notice it at the elbows as we go into winter. I have not had thinning of hair that I see. I don't know if that makes it more reactive. The good news is my hematologist has discussed that as your platelets drop your body increases release of precursor cell types (megakaryocytes). These are more efficient at clotting as they are a larger size.

However if you have oral hematomas it would consult with a physician. I've had them 3 times now when my counts were under 10 (most severe the night I was diagnosed with dime sized hematomas and a count of 4k), but every case is different in some regards.

Best of luck. 3/4 of my family immigrated to the US from Norway in the 1800's.

Velkomen and Talast!

Helgafj:

Hair loss is a listed side effect of Prednisone tapering. Many people have had that problem. It will stop a few weeks or months after tapering off completely. Sometimes it's not actual hair loss but the hair itself breaks close to the scalp. There are shampoos that can treat it, usually found in any drug store.

As far as thin skin, that depends on how long you've been on Prednisone. I was on high doses on and off from 1998 to 2003, then on 10 to 15 mg's from 2004 to now, and I have really only noticed my skin thinning in the past two to three years. I have abrasions all the time just from brushing against something a bit abrasive. Are the scratches healing? Try Neosporin and try paying attention to what could be causing it. Sometimes we do things and we don't realize what caused it. I used to get petechiae on one hand all the time, even with higher counts. I couldn't figure out why, then one day it hit me. I slept with my head on one hand and I was cutting off the circulation. That can cause petechiae. I stopped doing it and had no more problems.

Thank you both!

I suspect some of my petechiae comes from scratching or pressing, I noticed last evening, that the petechiae on the side of my knees is exactly where they press together when I lie on my side.
And some of the bigger clusters really look like I´ve scratched myself. I have tried scratching a little spot to test that theory out, but nothing happened - although that might just mean my platelets are a bit higher now. I was only on prednison for 7 weeks and I´ve done 3 HD dexamethasone-pulses, so it´s not been long compared to some people. I just found the idea of "thinner skin" causing this, rather comforting!
(I haven´t been to my doctor, I already know my platelets are very low).
The hairloss started after I did my last steroid-treatment and it´s been falling off in buckets, just glad it was thick to begin with, or I´d worry about becoming bald before christmas..


Have you been to Norway, Kyndig? Do you stay in touch with some family here?
It´s a great country, beautiful and friendly people too. I´ve lived here for 16 years now - time flies!

On the subject of rashes (and not hair loss), I'm a bit of a bleeder. Despite not having particularly low counts, I have the petechiae, rashes, and bruises to make my docs as well as friends wonder just what I get up to. My skin isn't particularly thin, and I'm not that clumsy, though I've had ones on my chest and thighs that made it look like I was attacked with a whip.

Sometimes a rash is just a rash, and doesn't seem to indicate anything else even though it really looks like it should. Scary at first, but now just puzzling.

I have never been to Norway... And sadly no connections with family there. My heritage is part of the Sami people from what I can find. There were a lot of ties cut during that time. I do hope to visit eventually.

If you get ever get the chance, you should visit Norway. It's a beautiful country and norwegians are very friendly

I guess I'm just clutching at straws, I hate being at 1-2.. So I've been trying to convince myself I must be at least 5 or 6! Having blood count done tomorrow!