Any APS'ers have issues with petechiae - Hughes Syndrome A...

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Any APS'ers have issues with petechiae

mylafont profile image
20 Replies

I've recently noticed petechiae on my lower legs and feet. Have any of you guys here experience this.....is this something else that goes along with APS and or the meds we have to take? 

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mylafont profile image
mylafont
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20 Replies
Tinythepanda profile image
Tinythepanda

I'd be interested if anyone else experiences this. I get it over my ankles and tops of my feet. I've wondered whether it's the warfarin causing mine.

jetjetjet profile image
jetjetjet

I had one bad bout with it  a couple years ago and i turned red from my ankles to my neck and it lasted a day and half . It was a scary ordeal . i checked with one of my specialists and he said it was directly related to the APS. I haven't had another episode yet . I still get red when having flares but that was totally different.

Of course i went to the  ER  and they told me it was hives ??? 

So i looked it up and there it was in the picture .

Before i went to the ER i took a shower and did that ever make me red!!.

    

Lure2 profile image
Lure2

Hi,

I have had that on my lower leg for several years after I got APS. The doctors have noticed it when it started and made notes about it. Mine are less than 3 mm and are sometimes aggressive in colour and sometimes more pale almost brownish. 

 I think it has something to do with anticogulation and trombocytes but it is only on my lower legs.

Show it to your Specialist.

Kerstin

Firefoxie007 profile image
Firefoxie007 in reply to Lure2

Hi,

My legs started going red, esp the right leg, then it turned brown working up from my toes to my knee, then my left leg have just started to turn brown but only up to the middle of my calf. Would this be to do with APS or just skin discolouration. I've have had 3 different diagnosis, and I don't know what one it is. The right leg up to the knee (the front part) is numb and so is my foot but I have got a good pulse. Any idea?

Lure2 profile image
Lure2 in reply to Firefoxie007

Hi Firefoxie, I have read from your question 5 months ago about the Warfarin and INR. I wonder if you are now on Fragmin or Warfarin?

The discolouration I do not know about but your leg and foot should not be numb! 

You have a good APS-Doctor and I wonder if you have talked to her about it?

Kerstin

Firefoxie007 profile image
Firefoxie007 in reply to Lure2

Hi, 

My doctor has put me on fragmin twice a day. I got another PE while being on warfarin but my legs was not so discoloured as they are now. My doctor can't see me before July as she is fully booked. So it's gone from Deb to June now July and I don't know how much longer I can't put up with the pain. So I'm in a catch 22.

 Tina 

Lure2 profile image
Lure2 in reply to Firefoxie007

Hi Firefoxie, 

I really wish I could help you but I think a good thing for you to do,  is to put your own question on our site with both the discouloration and your numb leg and also your very bad pain and what to do. 

I guess you are anticoagulated at present with the Fragmin x 2 daily but I do not know about the doses of Fragmin. As you probably had read I have Warfarin. I have very little pain also.

 I am sure someone else will answer you much better as we have so many members who know a lot on our site. Also try to get in contact with your Specialists office and ask what to do. 

Take care!

Kerstin

Firefoxie007 profile image
Firefoxie007 in reply to Lure2

Hi,

Thank you for your advice. Although you say to get in touch with my specialist, but she is also baffled by the way my blood reacts with different blood thinners. I'm not on Wafarin just Fragmin 10.000 units twice a day. And she only put me on Fragmin because I was on Wafarin 5mg my INR was 3.8 and I still got a PE (I've got a situ (stent), in my groin). 

She was supposed to see me 3-4 weeks after my PE to find out what is going on and to do more tests, but she decided to cancel my app and made it 6mths later. I asked my GP, she dot know what's going on and that there is nothing she can do becoz I'm to complicated. Now I'm left in limbo.

Anyway again thank you, I will just have to wait and see, hopefully I won't get a clot elsewhere, This is what scares me.

Tina 

Hughes-Comrade profile image
Hughes-Comrade

Slight chance, platelets are a little low.

Beartje profile image
Beartje

Hiya, I have them on belly, chest, arms and legs. They are supertiny and, in my case, not related to medication. They appeared during pregnancy and have remained there, for almost three years now.

DannyBoy1 profile image
DannyBoy1

Mine showed up about the same time I was diagnosed with APS. Tiny little spots and blotches on the tops of my feet and around my ankles.It has stayed with with me since.

mylafont profile image
mylafont

I sent a note to my doc. Waiting on reply. I've read too that they are burst capillaries and harmless, but couldn't find much of a connection directly to APS or the warfarin on the internet. Even Coumadin Clinic didn't think much of it.  Coincidentally it showed up shortly after purchasing and wearing a new pair of sandals.  I thought it was from the new shoes because it was on my toes at first, but then it went up my legs.  Other than the not so nice appearance I'm not going to worry about it for now. My dad has lupus has he has this too, which just showed up as well. We both also have neuropathy too.   

Thanks everyone for your replies.  I love this forum and the members on it.  Sometimes you get more info from others' experiences than you do from the "experts".

MaryF profile image
MaryFAdministrator

I have had three or four come up together and fade after a few months, but not more than that.  MaryF

Leenalina profile image
Leenalina

My daughter has got a lot of little petechiae or hematomas (or what do you call those red vein looking stripes in surface of the skin?) in her cheeks. She has gor migrane also, but not APS diagnose. I have APS. I wonder should it be checked or is it normal? Could it have something to do with this condition?

Lure2 profile image
Lure2 in reply to Leenalina

Hi Leenalina,

I wonder if we are talking of the same thing. These petechias are red dots (mine smaller than 3 mm) and usually on the lower legs. Sometimes fade away but coming back some other time.

If your daughter has stripes on her cheeks it must be something else. At least I think so. Better show it perhaps.  

Hope your are ok. We have had a cold week with snow here in Stockholm.

Kerstin

Leenalina profile image
Leenalina

Thank you Kerstin! I don't recall I have writen about these skin bleedings of my daughter before. But I hope that it's normal, like you say. :) They have been there for long time, but my eyesight has gone worse and yesterday I looked them with glasses and it looked a bit odd.

Ok, thanks! :) I think we have the same weather now, it has been snowing yesterday and this morning. Take care!

Leenalina profile image
Leenalina

I found it from the net. It is like this: livestrong.com/article/1102...

mylafont profile image
mylafont

This link lists the meds and some conditions that can cause it.

mayoclinic.org/symptoms/pet...

MrBigDog profile image
MrBigDog

I have been suffering from this on both my lower legs and feet, but mine started many years before I was diagnosed with APS. It started with my first bout of cellulitis, from an injury to my left leg, and being diagnosed with type 2 diabetes. That was in 2001, seems I've been falling apart every since...

NanaPam profile image
NanaPam

I have them all over my stomach

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