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Sticky Blood-Hughes Syndrome Support
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Strange lesion on lower leg

I have a lesion on my leg. I normally have petechiae but this is different. It has not changed in one week. It does not itch, not painful and does not change colors when pressed. I did not injure my leg. I take Xarelto daily for primary APS. Has anyone experienced anything like this? I hope it is ok to post the photo and does not bother anyone. I’m not at home so I have not called a doctor.

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Hi, can you make an appointment over the phone to see your GP, ring them and explain you have something new as a visible symptom? I am guessing you have not bruised yourself? Or not that you can remember? Sometimes this can be the cause, but I would still go the the GP, great you took a very good photo! nhs.uk/conditions/phlebitis/ and ncbi.nlm.nih.gov/pmc/articl...

Let us know how you get on.

Mary F

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It’s not a bruise. I’m trying to see someone where I am now but the hematologist thought I should see a dermatologist which thought I should see the hematologist. 🙈

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Maybe Vasculitis? I’m no expert but I know a lady on here that is. She’s American and very very bright and has been through the wringer with Vasculitis. Do I have your permission to alert her to your post?

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Sure.

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Ok. I’ll get in touch with her.

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Any reply from friend or did i miss it - i am going 3 different ways at once today

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i have those but mine are round - and after awhile get dark around the outside.

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Thank you for your reply. Do they go away? Do you know what it is?

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Sorry to say they never go away BUT i have one that is getting red i will be having checked again-- i see my PCP i hope this week - emergency appointment coming up for another problem right now . can't remember what they called them - it was just " Lets keep an eye on them " and now they will be - wish i could do a pic for you but that is way above my capabilities. { very limited i am } sorry -- my supervising Nurse should be calling me , should of been today but slim chances at this time BUT when she does and i speak to her i will get the medical name for them or at least thats where it is now . be back in touch best to you C & J

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Thank you. I’d love to know the name. Sorry it does not go away. I hope you feel better soon!

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Hoping Jet jet is not describing ITPP. ( immune thrombocytopenia purpura. ) it’s a very low platelet count that can travel with APS.

I had a very severe life threaten case In infancy.

Usually it would not appear as an enlongated lesion like this, Raw57. It would also have a characteristic Ring appearance.

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She said hers are round. I agree with you. I’m gping to see if there are in changes in a weeks time before seeing a doctor here in Mérida. It is weird. It’s not a rash, bruise or insect bite. I’m going to buy an antifungal cream to see if it reacts to that.

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We are now taking about two different issues. Jetjetjet and Vasculitis / Ndstephens.

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Are you out of the country still?

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Yes. 8 more weeks.

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Oh, ok. I would advise you have your platelet count checked.

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Yes.

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i think i wouldn't wait and be careful what you put on it - my Doc's would go bananas if i did anything like that because it gets into your blood and entire system in that matter . I have a lot of health issues and they watch me very closely and they would be right off the wall if i did that and i got to agree with on my list of medical problems the last and 25 TH one it states " medically complex patent see attached " and the attached is the listing of my top 7 Doc's that have to be notified before they do anything. It has saved me more than once .you don't want to complicate thing s and or make it worse- i have done that and with my blood it was a big mistake .

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Kel mine looks more like a sore at start and then turns a light purple pinkish color [ best i can describe it ] and then turns dark around the outer edge i actually have 1/2 dozen of them sores , about the size of a Blueberry some bigger then others BUT all on legs - they have checked them when first started - my supervising Nurse noticed one had changed a tad about 4 months ago and that is the now the red one But i didn't notice BUT now it's turned red so i guess i should of been more on board with Shannon on this one -she has to be present at any appointment i have which are many -- so she knows me more than anyone and has been dealing with my APS 8 out of my 10 years after diagnosis- i will look ITPP up and take it to Shannon Thanks Kel and Raw i need to call her now anyways missed her call yesterday for this infection GRRR

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I don’t think your nurse would have missed the classis itpp purpura, and your blood work would quickly reveal a low platelet count, which would be low, not border line if you had the visible purpura.

But yes, ask and have her verify.

Have you been checked for Vasculitis?

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i was dia. once a while ago and the finding as they called it Vasculitis from a wasp sting that landed me in hosp. , they never bothered me before that i would get stung it hurt and swelled and in a few hours OK but when i got stung 5 years into APS it went crazy - but as we know if they don't really know they guess the best they can for the insurance end of thing - i mean for something like that they did and the same with a spider bite i got but that one wasn't so intense as the wasp . ! I will look into it now - one doc's office phone call down - still waiting on nurse Shannon - the most crucial this leg and infection in face we have been battling all week , 4 different places so far one being ER for 5 1/2 hours , that always makes me smile and starting to try 3 RD antibiotic . !

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I’m sure with an current and difficult infection the nurse and doctor are keeping a very thought eye on your blood panel.

Good luck with that.

As I say, I know little to nothing about Vasculitis. I only recently looked at it briefly because another member who is unfortunately battling this right now brought it to my attention.

I was so young with ITTP I don’t remember anything about it- only what my sisters now tell me and show me photos of. My mom passed away on Christmas Day 1996 of APS complications- so I can’t ask her. I only know I will up one morning to high purple bruises that looked ,” ringed”

I was in and out of the hospital with complications for a few years, but acutely and critically ill for 6-8 weeks.

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You know listening to you since when you started here - you have had quite the ride so far and doing a great job of it my friend - So sorry to hear of you losing your Mom when you were so young or losing your Mom at any age in that matter - You and your mom the ones the family with the APS ?? i am from a family of 6 other siblings and of course i am the middle child and no one else has had blood problems at all - one sister with Breast cancer real bad oldest brother a few years ago kidney trouble and heart trouble - But i got the diabetes from Dad - glaucoma and cataracts from mom . the blood was a bonus in my mid 50's i have always been hyper -wound for sound - wired for 220 as they say. always getting busted up nearly died twice - crazy wild kid -nerves gave out when i was in mid teens but recovered well with that . broken many bones- but always rebounded -NOW this APS my doc's labeled me a medical enigma - they had told me after my 24 weeks testing that it would take 2 yo 21/2 years to slowly clear the clots and my wacky body did it in 6 months !! that;s when my labeling came about . both lungs R full of cluster clots - left massive clot along bottom of left they figured about an inch thick or better -- behind right knee - left groin deep , always had trouble to get a look at it -left side neck and - left arm pit !! But you know Kel when i read about you !! WOW o WOW . could you guess what kept me alive so long with all those clots ?? speculation mind you but most agreed ??

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Maybe Post Thrombotic syndrome? That is what I have on one of my legs, much bigger and darker than yours though. It does "flare up" and settle down, just worried that one day it will ulcerate. It is also raised up, I have photos but don't know how to attach. Hoping it is something minor for you and will clear up in a few days..

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Thank you. I have not had a DVT in this leg. But who knows. When I have an acute or even chronic DVT in my arm I get really horrible skin lesions. They have to be drained, months of

Antibiotics to clear them up. It makes me feel very ill for weeks then the antibiotics make me sick. My skin peels. Not fun nor attractive😬

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I saw a dermatologist today. He does not think it is Vascular but he has never seen anything like this. He gave me a cream to use for 2 weeks then return to him to see what it looks like. He is an older gentleman and being a dermatologist in a tropical climate I’m sure he has seen a lot of odd things. He ordered lab work. It looks like I have a bladder/ kidney infection. I have not felt well so that explains that. I will not get all labwork back until Tuesday. He did quite a bit of labs. Oh, on the order sheet it has test for anti phospholipids. I was surprised that it would be on a general lab test form.

He can biopsy it but we figured I’d bled a lot so we will just wait it out.

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Sounds like a great doctor/ clinic

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