Running alive with livedo! Bloods for aps are negative. It's abit of a strange one

[Lisalou19]

Does anyone get extensive Livedo? It covers my legs, hands and all my arms.

No diagnostic reasoning for it at this time, is always worse when I feel poorly.

The photo is of my arm. X

[KellyInTexas]

Have you been checked for APS? ( Anti phospholipid Antibodies?)

It’s very likely you have been if you have lupus. One in five lupus patients also has APS.

I feel certain your Rheumatoligist would want to know about a developing or worsening livedo.

[Lisalou19 in reply to KellyInTexas]

Anti body was negative for aps but rheumatologist concerned at how much of my body is getting covered in it. X

[KellyInTexas in reply to Lisalou19]

It is possible for some patients to go in and out of sero negative/ sero positive status.

I guess it depends on other symptoms as well.

ghic.world/

[Lisalou19 in reply to KellyInTexas]

This is exactly my worry, what if I am seronegative?

I feel so unwell week after week and I can pin point it to 2 things: hormones or my own blood

I'm under guys hospital which is run by a leading rheumatologist and I now don't want to question their approach to it x

[JennaShi in reply to Lisalou19]

have you been tested for the Cardio lipid antibodies as well?

[Hidden]

3 things I’ve gathered from this community and the Sticky Blood one: 1. I have Livedo too - always have - mostly when I feel more poorly.

2, I asked the vascular dr who is local Hughes man but he was entirely dismissive and said anyone would get Livedo if they sat around getting chilly. I said it was rheumy no.2 who diagnosed it but he just went 🤷🏼‍♀️🙄🥶. He said my history didn’t tarry. Not sure what history but I guess he meant no blood clots, TIAs or miscarriages as I’m 56? I actually had 3 miscarriages but he didn’t ask and I’d run out of mental bettery by then 🤯

3. According to Dr Hughes there is a triad of autoimmunity comprising Sjögren’s, Hashimoto’s and APS. And as Kellyintexas says it can be seronegative. But at least you are clearly better placed to get a diagnosis in Guy’s than I am here in Scotland. Same with EDS which this arrogant Dr just ripped the Micky with me over. At least they are paying heed to your Livedo. X

[Lisalou19 in reply to Hidden]

This definitely is not anxiety. If I said to you I feel like I'm mutating does that make sense?

Like you it is always worse when I'm feeling other symptoms. It's all over the back of my hands.

My recent screening was negative 🤦‍♀️ for aps. I honestly feel like this lived is trying to tell me something.

At my last appointment my rheumatologist said ”livedo is common in women on their legs, but it's rare to see it over the arms and hands”

So I don't buy that being cold as you were told x

[Hidden in reply to Lisalou19]

I don’t buy anything much this chap told me tbh but I was trying to reassure you that your doctors are clearly watching out for you - unlike me with mine!

He did at least accept I have Raynaud’s from photos but then tried to tell me it was primary. I rather forcefully explained that I only started having Raynaud’s when I was on Methotrexate for RA age 48 and I had never seen anything like this before?!

This chap is the Scottish Scleroderma and Hughes specialist so I didn’t feel I could tell him I didn’t believe him. Awkward really. X

[Lisalou19 in reply to Hidden]

I do feel like I'm being watched and I can't complain. It's just such an uneasy feeling when my bloods keep saying NO. I know my rheumatologist is as confused as I am. My pile of symptoms is getting bigger and bigger.

Sorry that this guy is not very helpful to you. To some of these doctors they don't tend to look past the little bit of study time they gave autoimmune diseases.

My new rhueme is very young and I kind I feel at ease with him. Took me a long time to find him tough x

[Hidden in reply to Lisalou19]

Well I’m very glad your young chap is so good for you.

My present rheumy is my 4th in 8 years and I’m bailing out soon as she never sees me but instead passes me to her colleague - the CTD/ scleroderma chap. He is telling me that Sjögren’s patients don’t stay on clinic lists usually.

Like you I’m always looking for visual clues as to why I feel so unwell. But the clues I see are dismissed if ENA bloods are normal so either I’m reading too much into things like Livedo and Raynaud’s or they are reading too much into my normal autoantibody bloods?! X

[Lisalou19 in reply to Hidden]

I will 100% go with the later. My ENA and everything else is normal. I only have anti bodies for myositis and scleroderma but not really many of the symptoms . Although I am gradually getting weaker. But still these doctors are ploughing a way at me . I just wonder if they will reach the point where I get a seronegative diagnosis like my dad.

I do think that having attended many of my appointments with visual symptoms has helped.

Theres many more bloods out there to be done apart from the standard screenings. Have you ever had extensive bloods taken? x

[Hidden in reply to Lisalou19]

Well I think I’ve had extensive bloods done 4 years ago by my second rheum who thought I had APS. I was still on 5mg steroids then though so most blood tests were fine apart from my PV/ ESR which was still soaring.

Then I relocated again, off steroids, and in 2016 ANA was quite clear positive 1:320 with nucleolar pattern for Scleroderma or Myositis. All ENA normal though.

But last summer ANA had come down to weak positive of 1:80 and one ENA was equivocal - anti th/to. But the scleroderma/ CTD/ Raynaud’s/ APS dr said that this was probably a false positive due to pattern of my ANA?!

Search me how he figured this but I’m getting a second opinion privately in 10 days because feeling so ill and in such pain with no one taking previous diagnosis of RA/ inflammatory arthritis or examining my joints and having to flag everything up with photos etc is making me so anxious! Xx

“Anti-Th/To antibodies (anti-Th) are one of the specificities that show nucleolar staining in indirect immunofluorescence antinuclear antibody test. Anti-Th is associated with systemic sclerosis (SSc), mainly the limited cutaneous variant. However, cases of anti-Th also have been reported in other diseases”

[KayHimm in reply to Lisalou19]

Lisa — I wouldn’t say your blood tests have all been negative. Wasn’t your anti-Jo positive? And, yes, you seem to be not only watched but undergoing serious investigations. Your neuro and urology consults will help them put things together. It is just very stressful for you as they continue to get a handle on your condition.

Kx

[Wendy39]

Hello

My sister has livedo and she has EDS.

Wendy

[Roarah]

LR is commonly found on arms, legs, hands and sometimes trunk. Yes it is seen sometimes with APS, infection and other sinister causes but more often it is actually idiopathic and benign. It is frequently seen in fair skinned healthy children while cold or exercising but also can become more permanent as one ages sometimes without necessarily any underlying need to treat. This might explain why doctors often rightly shrug it off as just one of those things for it more often than not is really just one of those things. So if your doctors who have all your history in hand and are very informed about these conditions is not concerned I think you can relax and trust you do not have sero negative APS, which is very controversial and would not likely be treated sans a clotting history with warfarin or even aspirin by most knowledgeable treating hematologists anyway today.

I do hope your flare lessens and you feel better soon.

Xo

[KellyInTexas]

Lisa Lou,

As I mentioned before, sero negative status must be taken in context with other symptoms, ( patient history) and I would say it depends on the competence of the clinician.

I also personally think sero negative status and treatment with thinners would be risky.

I think it’s another thing entirely a patient goes sero negative/ sero positive/ sero negative and demonstrates an unprovoked clot. At that point patients are usually taken on a case by case scenario. Every Hematologist (in the UK Prof Hannah Cohen is fantastic, she’s who I use ) as well as my team in Texas - I have worked with has told me so. This for me has involved starting with the lowest INR possible ( for me with both arterial and vein involvement- 3.5- 4.0 set by Professor Hughes, yet I still continued to clot, raised to 4.0 -4.5 yet still continued to clot, by my American Hematologist- still continued to clot, so now we are running at 5.0 and suppressing with Rituximab.

My son developed the anti bodies by age 15. ( he is now 17, almost 18.) He’s not had a clot. His pedi Hematologist prescribed him enteric coated full strength Aspirin daily. He actually can get mild nose bleeds, so once a week jr strength is enough. We played with dose until we found what suited him. The headaches are now kept at bay, and no more bleeds. My Rheumatologists and hematologists were very supportive of all these plans with coated jr aspirin for headaches/ anti platelet yet no clot. It’s actually a very common first order plan for situations like these , ( provided no tummy troubles and a doctor is monitoring) especially with symptoms and a strong family history.

This just demonstrates that you should really talk to your doctor about the gamut of possibilities. Listen to patients who have actually have APS and have been treated.

I encourage you to pay close attention with people who have confirmed APS and livedo. Why? Those are the people you want to learn from at this particular juncture right now in this moment in time. Listen to what they have to share with you. Livedo alone can be benign. With joined up symptoms and an auto immune profile , ( patient history is so important) coupled with a family history it might not be. This is where the importance of the clinician comes into play.

My APS diagnosis came out of the blue- to me anyway- by surprise. I had certainly never heard of it, although I was horribly symptomatic. My Texas Rheumatoligist picked up on it- diagnosed me- ran the blood panel for it. It came back positive. That’s when he told me. He explained he had to draw again in 12 weeks time to make sure it wasn’t a false positive, but he was sure it would be positive again. And it was. I got the results Halloween .But only low- medium. I clotted the next week with a massive DVT and warfarin commenced. November 3, 2016. 10 days in the hospital.

In the hospital I went negative with my antibodies. My Rheumatoligist knew this was quite common for APS patients. My Hematologist did not know this. My GP did know this! Back and forth it went.. . It caused some confusion for a bit.

Fortunately now it’s never given a second thought. It’s because my particular body is now understood. But it has to be taken with caution... both ways. It is very trick for patient and doctor. APS is a razors edge, but it is true that it’s far more likely a patient has complications from clotting than bleeding. The statistics are four fold. While properly anti-coagulated, at that. ( told to me in clinic by Dr Jill Schofield, specialty APS Rheumatoligist.)

I was diagnosed with full lupus today, as well as small vessel Vasculitis. It’s also called lupus Vasculitis. I was also diagnosed with full scleroderma. I seem to have hit the jackpot .

[Lupiknits]

I have LR on the parts I can see, whatever the weather, though worse when cold, and have since a child. I’ve pointed it out, but it’s just been “oh yes, LR”. I’m also very fair skinned which must make it easier to see. Way back in the time of open fires and no central heating it was considered to be caused by sitting too close to the fire, especially where it was worse around the knees and legs.

APS has never entered the performance which currently has parts for scleroderma, lupus, Sjögren’s and Raynaud’s.

I do hope they work out something for you soon. I’m in some kind of flare at the moment which I think now was coming on last week. For the last two days I haven’t been able to eat and have dozed much of the time. I think I have a UTI but can’t face dragging myself to GP about. I very much sympathise with your flare x

[panda2]

Hi Lisa,

I've got this too. It's new for me, but for a flash on my lower legs last year (then I forgot about it!). It is now on the inside of my arms, exactly like yours, just not so pronounced and it's not there all the time. I don't really feel concerned about it especially after reading KellyInTexas, Roarah, Twitchytoes and Lupiknits and how it manifests in each for their own reasons. I suspect I fit into the fair-skinned category (particularly under the arms and now that I just cannot have proper sunlight anymore).

How are you feeling about it now after all these excellent responses?

Panda x

[misty14]

Hi Lisa

I too have livedo quite extensively and have been tested for APS several times over the years and it's always been negative!. It's regarded as another symptom of these AI illnesses, does occur in lupus and has always been kept an eye on!. I do hope the Consuktants at guy's diagnose you soon. Your with a good hospital team. Xx

[MusicalFurbaby]

Hi Lisalou19, never heard of Livedo before today, so thank you—I have learned something new today! I have APS and I reckon I get a motley skin appearance very similar to Livedo at times. I’ve never had a clot or miscarriages, but I’ve just been diagnosed with vasculitis, which may relate to the anti-cardiolipin antibodies. Keep chipping away—the search for answers is maddening, I can certainly relate. And it’s definitely worth pursuing with your rheumy.