Petecheia

[dar58]

does anyone get petechiae like I do? It's getting worse all the time. I just got out from the hospital yesterday after 8 days for breathing difficulties. I breath only six breaths per minute where the normal average is 12-20. That is whether I am awake or asleep. I was on 9 liters in the hospital after I was found unresponsive and they coded me and was resuscitated. Showing a pic of the petechiae on one atm but its everywhere.

[Manofmendip]

Hello

I see that you have posted on other forums to this one. Could you please confirm that you have a diagnosis of APS/Hughes Syndrome, as this is a forum for patients who have that disease and it is not a general medical forum.

Dave

[dar58 in reply to Manofmendip]

my earliest post for APS was well over 2 years ago. Unfortunately, I have this and two other autoimmune illnesses, MS and Lupus as well as other illnesses. I was dx with APS now 9 years ago, MS and lupus approximately 17/18 years ago within one year of each other. Dave, you have made me look like a liar and an ass with YOU wanting a confirmation. While, other admins and others who have answered my posts here can tell you I was even concerned about a year ago after being tested again by my hematologist, my numbers were higher. Just because you may have not seen or replied to any of my posts, because I only post when I have problems or a flare. You have made me want to leave all groups after your insulting reply. Thanks for making me feel worse than I already did. Darlene

[Manofmendip in reply to dar58]

Thank you for your reply Darlene.

It was not my intention to insult you, or to make you feel worse and please accept my sincere apologies if my reply inadvertently did make you feel that.

All of the Admins on this forum are having to check that folks have not arrived on the wrong forum, when we get a post that does not mention APS/Hughes Syndrome, as we have been having some issues, recently.

We do have a lot of traffic on the forum and it is not always possible for us to remember every person who has posted over the years.

Best regards

Dave

[dar58 in reply to Manofmendip]

now that I have confirmed to you that I indeed have APS and have posted many times here, with other admins answering my posts as well as other people from this forum, will you now continue to ask me to confirm myself in other groups I belong to, as you did mention you have seen me post on other support groups? I thought these were all support groups, not groups to make you feel like you are lying. Somehow, I wish it was all lies then I wouldn't be suffering so much and wouldn't be hospitalized more than I am home. Sorry for being rough on you, but I asked a question looking for support and only got your reply, no support. Have a good day.

[charlieab]

Hi Dar58

Hi dar51

Hope you are feeling a bit better now with your breathing. Sounds like you have had an awful lot to deal with in the last few decades.

I bumped into an old friend last week, well she sought me out (as Id been avoiding people a bit since my health crashed earlier this year). She has had lupus for a while now and we were able to swap autoimmune stories. She then hobbled off to her car and I hobbled back to the house. It kind of felt better having spoken to someone who understands what a hard road we have to travel with autoimmune conditions.

The spots on your arm look very much like those on my arms. These appeared earlier this year, soon after my fingers swelled up, beau lines appeared on my nails, my fingers began bleeding, I developed raynaud's, my face became splotchly red, livedo reticularis appeared on my legs, my joints and mucles began aching etc bleeding etc. I have tested negative for APS antibodies but have been diagnosed with another autoimmune condition and a handful of other conditions in the last two months. I feel like I have had the vengeance of teh god's visited upon me! But none of te diagnosis really explain the livedo or red face or extreme fatigue, and so Im seeing a consultant who specalises in vasculitis and APS to find out if I have the former or a sero negative version of the later. Do you know what one of you conditions is caasing the red spots? When I first saw mine, I thought Lupus but Ive tested negative for that.

Best wishes

[dar58 in reply to charlieab]

best wishes to you also and thank you.

[charlieab]

Not sure why it says Hi twice at the top of my post! I think I must have mistyped your name and then thought that I deleted the mistype. apologies

[Hidden]

I know that I have seen that on myself before but never knew what it was and it went away. What I had may not be what you have but it does look familiar to me I just never knew it had a name. I am in the US and still trying to understand this APS thing and have been trying for years to get better care from doctors. I don't blame them because I don't always know the right questions to ask. Seeing your petecheia now gives me something to ask about because I know I have seen that on myself before but I never asked my doctor or even told him because by the time I saw him it was gone and I assumed it was just some weird unexplained rash. I wish I could help you more but thank you for sharing. I hope you feel much better very soon!

[dar58]

I just left the Dr, he believes I have 2 different rashes, both petechiae which is non-blanching and the ones with heads on them is a Lupus rash. He has started me on steroids, put me back on Coumadin and took me off lovenox shots as I am 3.4, and my range is 2.5-3.5. Back to my normal dose of Coumadin.

[ndstephens49]

Hey dar 58, I have breathing trouble, too. On oxygen at night. Have sleep apnea (bipap ) PLUS issue with not enough respirations (central apnea). No one can tell me why. In 2004 went into respiratory distress at home and had to be intubated and put on ventilator. Was also nearly in kidney failure and renal failure also. My GP put me on loads of IV steroids and continued anticoagulants. That brought me out of it.

I think Hospital thought I tried to overdose but when the ER pumped my stomach they found no pills. They had no idea what was going on but I feel like it was due to APS.

Nancy in West Virginia

[dar58 in reply to ndstephens49]

Wow Nancy, same exact thing happened to me in December 2015. Even the kidneys failing but they said it all was septic shock. Now, all the breathing issues, only 6 breaths per minute, and now will have a sleep apnea test. Crazy things have been happening, all my autoimmune illnesses are in a flare up. I hope they can give us some answers. Add me as a facebook friend. Darlene Barre-Cabral. Tyvm

[ndstephens49 in reply to dar58]

Not so good with Facebook stuff but will attempt to add you.

[Hidden]

Hi, I am glad to learn the word for this condition. I have had it multiple times along with purpura. For me it is the tell tale sign that I have a blood clot. Yes, it is true. It is dumbfounding to doctors when I show them the rash and tell them I think I have a blood clot. The clot is generally under the site of the rashy area. Then they test me, and sure enough, they believe me when the results come in and not a minute before. Thank you for teaching me the word for this condition.

[MaryF Administrator]

I have five in total, which seem to stay there all the time, now... but not exciting enough to photograph! MaryF

[Hidden]

I take photos every time wierd rashes or blood clots appear. But remember I am newly diagnosed. I still feel like I have to prove I'm not a hypochondriac. I have so many little isssues (complaints) but I try to keep them to myself but I take a picture in case I end up having to explain something to a physician. A picture is worth a thousand words. Cellphone cameras are very handy.

Mary, do you have 5 permanent clots or 5 permanent rashes? If clots, is there another name for it once it becomes a permanent part of the vein?

[dar58]

I saw the Dr after I wrote the post. He confirmed it was a combination of petechiae and a lupus rash. I have had many bouts of petechiae and only a couple lupus blisters in the past. He believes all 3 autoimmune illnesses is in a flare up and started me on prednisone. They are clearing up but now I have a few elongated purple, almost bruise like marks.