Hello and welcome, at least your GP is noticing there is something there! It is great to take photographs, actually, as we all know what it is like to go to doctors only to have the symptom disappear as soon as the appointment is booked! We are not medically trained on here but we do have experience over the years with this.
This sort of skin condition is called Livedo Reticularis. I enclose the charity website, do have a really good read through it. The Symptoms for Hughes Syndrome/APS, the associated diseases and the main blood tests, it is best to do all three, and then repeat them 12 weeks later. Also at the same time to test your levels of B12, D, Ferritin, Folate and a Thyroid panel. Also jot down your medical history in bullet points, and your symptoms and relatives past and present with autoimmune diseases including Thyroid.
The blood tests for Hughes Syndrome are listed under the Hughes Syndrome section, 'main tests'
Also you could email your GP or their PA the charity website which most find useful.
Thank you so much for your advice and help. I am having the blood tests tomorrow so I will try and speak to a GP about having those tests done instead of having to go backwards and forwards to get anywhere
Yes I have this too and particularly bad on legs, I went for a procedure under a general anaesthetic this week and was very keen to let the anaesthetist know just incase he was like $&!t what's that!!!
Yes sounds like u need test for aps have u other symptoms too? Sorry if I've missed it!
Also good gp to pick this up and test for it. As I have these conditions and I am a practice nurse as soon as anyone comes with any kind of similar symptoms I'm like straight to the gp! Do u think they might have lupus or aps??!!
Hi thanks for your reply, I have a lot of symptoms! I’ve recently been diagnosed with thyroiditis so it’s hard to know if it’s that (Although the endocrinologist seemed to think I shouldn’t feel as ill as I do with it)
I have had bowel issues for years with diahhorhea and pain. More recently in the last 3 years occasionally bleeding when I have bad ‘episodes’
I was investigated for IBD but my colonoscopy was normal and calprotectin however I’m thinking that if I do have APS maybe it would explain the blood (which is like dark red blood clots) the Gastro said it’s probably internal hemmorhoids but I don’t have fresh red blood which he insisted it must be. (Wouldn’t look at the photographic evidence, gross as it is)
In general I have joint pains, high blood pressure,burning sensation in my legs (just started 2 weeks ago hence appt with GP yesterday) really bad fatigue to the point if I walk any longer than an hour I’m knocked out for the whole of the next day, low B12 which I had injections for and low ferritin. Frequent migraines and headaches and insomnia! And I catch every single bug going. It took me 6 weeks to get over a recent bout of flu.
I feel like my life is falling apart, I’m only 30 I’ve had to suspend my university course until I’m well enough to go back, which seems like never at this rate.
I have had the blood tests this morning, which i did need to ask for as the GP had just requested an antibody screen for IKF (I think)
They couldn’t find the anticardiolypin test on the system but the Dr who I asked has put a note on the blood form to ask if they can test that aswell as the other two that are recommended for testing for APS
Sorry for such a long message. Your patients are very lucky to have a nurse who could spot a potential problem and forward them on to the right person!
I know it’s a strange thing to say, but in some way I hope you do test positive if indeed you do have APS so you can get yourself sorted quickly.
Chances are you will feel so much better with anticoagulation. Like most of us, warfarin will likely be the route you go, and you will find it takes a little bit to find your therapeutic dose. Then you will likely encounter a few little challenges along the way keeping within that target range.
We can help share with you our experience with this from our expert APS clinic nurses. ( the doctors are great... but honestly in my opinion it’s the nurses who really work the most with patients in this area. Good ones are worth their weight in gold.)
I have the livedo quite strongly. It’s usually an indication you will do better with and need a higher INR. The arterioles are involved in both the cerebral and skin aspects.
If your GP tells you it’s ok, ( especially since you have an intermittent GI bleed) you might find your headaches fare better and your livedo clears a little with jr aspirin taken with food each day .
Plaquinil helps with aches and pains- this medication and management falls squarely in the domaine of a rheumatologist. I would think that sharp GP of yours would need to be referring you to rheumatology also, regardless of hematology. Sjogrins, sicca syndrome ( pre cursor to hashimotos immune thyroiditis with antibodies) can pre date frank lupus or other comorbid undifferentiated connective tissue diseases that run in tandem with APS by as much as 10+ years . Management with plaquinil can slow down these afore mentioned “ big three” as Dr. Hughes Likes to call them.
I would ask your GP her opinion on the wisdom of bringing a rheumatologist on board at this point since you seem to be displaying signs of auto immune disease. I am concerned that hematology will miss the other players, especially if you happen to be sero negative.
Lots of useful and interesting information, thank you. At my recent first APS specialist appointment the rheumatologist said that livedo could be Raynaud's and not necessarily APS. Is that your experience too? I am not (yet) diagnosed and am awaiting further tests re possible Sjogren's.
Livedo is thrombosis of the vessels of the skin, and raynauds is a vaso spasm disorder that is known to be more prevelalant in auto immune diseases in the connective tissue umbrella. ( can also be associated with smoking...). There may well be an overlap of the two in the antiphospholipid syndrome by virtue of APS being both an auto immune disease and a clotting disorder, but the are not one in the same by definition and origin.
Thank you. I was expecting it to be a definite sign of APS and was a bit surprised that it was, if not exactly brushed aside, not apparently of much significance.
I have had all of the correct tests done (did have to ask another GP though as the one I saw on Tuesday hadn’t put the correct ones on!) so hopefully I will get the results soon.
I don’t think I have Raynauds as I don’t get cold/numb hands. I have a friend who has it and my experience is unlike hers!
no, the photo you posted is a classic livedo and would not cause any sensations of vaso spasms like numbness or tingling. You are correct. I also have Raynauds as well as livedo. I have both quite strongly. They are very different animals all together.
Hi I am triple-positive and when i was not anticoagulated I could see it on my legs but i do not think any Specialist have seen it. If I get it today I know that my INR is too low and that I need more Warfarin.
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