Riddled with livedo but blood says no... - Sticky Blood-Hugh...

Sticky Blood-Hughes Syndrome Support
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Riddled with livedo but blood says no. I flare weekly with what ever this is. Hardly any respite

I am under guys hospital so I know I'm in good hands. My current diagnosis is UCTD. I started showing livedo on my legs last summer. Since then I have mutated. I know have it over my entire arms and back of hands.

I will get some more decent photos of it. It is worse when I am feeling poorly. As quick as I come out of a flare I'm straight back in it.

My bloods are negative for APS, but I really feel like this livedo is talking to me. It is noted in my hospital letters as ”extensive”Abit concerned x

Photo is of my arm

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Looks like livedo to me too😢

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I don’t understand what you are saying. Guys have diagnosed you with UCTD, which is a confusing diagnosis. Livedo is associated with UCTD and lupus ie SLE variant conditions.

Perhaps you should also discuss your flares at LUpus Patients Understanding & Support here on HU. Your flares are associated with UCTD.

We can talk more fully there if you would like. Not everyone with lupus variant conditions has APS.

With good wishes,

Ros

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Yes I'm currently diagnosed with UCTD with worsening urological problems. It's abit alarming to be living with this

Off to opticians today due to worsening eyes x

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It can be frightening which is why you need & deserve support. Support from family & friends, but also from those who can share your experiences. UCTD is a catch all for autoimmune conditions such as SLE.

I hope all goes well with your optician but I strongly advise you to see an ophthalmologist ie a medical doctor specialist in the eyes.

With good wishes,

Ros

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Mine is there all time on arms legs and stomach but I dont think I am unwell when is extremely prominent thou...can be anytime.mine were photographed at Guys hospital.

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Hiave you find it is better when your INR is higher? I never notice it nowadays when I am properly anticoagulated. I have learnt that the livedo may be a sign of APS but we should not be very worried about it.

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No difference.yes it's all connected to APS.doesnt bother me thou

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But APS is too thick blood!

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You need to fight your case. I was diognosed with aps 9yrs ago and put on fragmin, they now say the criteria has changed and my blood tests are now negative. I sourced my blood test results through my g.p and they are actually positive!!! They are trying everything they can to discharged us all without further care. They state now unless you have a major stroke you do not have APS! I have suffered many pregnancy loses, TIA and I also have livedo on my arms and inner thighs. Please fight your case X

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Ask for a copy of the bloodresults that they say are negative. Was it the same bloodtests that your GP said was positive?!

We can go from positive to negative antibodies but still have the illness. Have the LMW Fragmin helped you with the TIAs?

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Hi yes I have copies of the blood tests sent via guys hospital to my g.p but to my face they told me they were negative. They have never sent me copies of my results and probably hoped I wouldn't ask for copies from my g.p.my Dr is confused as much as I am. Yes the fragmin made me feel like a new person x

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Did you mean to type ,” neurological “ problems?

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That's the one 😂x

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I’m the queen of typos... I get it!

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I've commented way down the page and a list of symptoms x

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Good, that will be helpful.

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Like Jessie68, I was told that my bloods were negative for APS by the Thrombosis Team at Guys and St Thomas hospital, when in fact they were positive for Lupus Anticoagulant and low level antibodies. I was finally diagnosed with APS last August by Prof D'Cruz, who I could have kissed when he finally diagnosed me, I was so relieved!

I was already diagnosed with Chronic Thromboembolic Disease since 2005 and had a history of multiple episodes of Pulmonary Embolisms, multiple episodes of DVTs and multiple episodes of both TIAs and much more serious clots on the brain. With such an extensive clotting history, It's truly dumbfounding that I had to fight so hard for my APS diagnosis!

As Jessie68 has said, the diagnostic criteria for APS has been changed at G&StT and this has been very frightening for some APS patients, who were already diagnosed with APS and are now having to fight to remain on anticoagulation treatment.

That said, you may not have APS at all. As you already know livedo reticularis is associated with many other autoimmune conditions. I think what you would like most, is some treatment for your flare up symptoms, which we can all relate to because flare ups can be brutal!

The trouble with having a diagnosis of UCTD, is that it's so non specific and that must be incredibly frustrating for you.

One thing I think will be REALLY helpful, is if you to start keeping a detailed diary of your day and I mean 'DETAILED'.

What you eat/drink, what you did, ie were you outside in sunlight, did you go for a walk, do something physical etc. How you slept, what meds/supplements you took and importantly, what "symptoms" you're experiencing.

I just use a lined A5 notebook for mine, I put the date at the top of a page and then log "everything" in that notebook, from what I ate, to what came out again at the other end! 😉

My APS affects my digestive system and my kidneys/urinary system, so I log symptoms of these too.

I then use highlighter pens to highlight each thing. For example, green for my symptoms, when feeling unwell, flaring up etc, pink for my medications, yellow for food and drink and purple for activities, of course other coloured highlighter pens are available!! 😉

Highlighting each different thing, in different colours is SO helpful because as you look back over your diary, it's immediately obvious if a purple highlighted activity, has caused green highlighted symptoms, or yellow highlighted food, has caused green highlighted symptoms etc.

This does sound a bit extreme but it's been SUPER helpful in discovering what triggers my APS flare up symptoms. As I have APS, I also log all my INR results in it too.

Doing this kind of diary may also lead you to a more definitive diagnosis because it will highlight your "specific" autoimmune symptoms. I think if you do a detailed diary like this for a month, probably less in fact, you will begin to see what is triggering your flare up symptoms.

Do you feel your symptoms match those of APS and would you mind sharing your flare up symptoms? I think this will really help Sticky Blood members regarding the advice they can offer.

Also, are you under the Rheumatology and Lupus Centre at Guys, or Haematology/Thrombosis Team?

Claire 😊

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My body feels like there is something constantly poisoning me. I rarely get a good day anymore I'm exhausted

Main symptoms are:

Burning skin rashes

Painful feet

Painful stiff hands

Pain in calves and hips

Nose ulcers

Nose crusting

Brain fog

Beautiful livedo

Bladder control issues

X

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For some reason when I read your symptoms, straight away "sjogrens" came into my mind but I'm not an expert on that, as was told I don't have it, despite multiple symptoms and very dry eyes and mouth.

I have very painful and stiff hands, painful feet and get the very painful and burning autoimmune face rash. I have livedo and brain fog and pretty much feel very unwell and in a shed load of pain most of the time. 🙁

Hopefully your symptoms may flag something up to other members. Maybe put up a new post with your symptoms listed, as this one has got quite long and they may be missed.

Autoimmune conditions are SO debilitating, I really hope you can get some treatment soon and a more definitive diagnosis very soon 🤞🤗. Claire

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Sjögren’s can only be definitively diagnosed by lip biopsy not bloods. 25-30% of sufferers are seronegative. It’s a syndrome because it has so many variants. Seronegative is more likely to present like MS and some don’t even have dry eyes or mouth until later. Some present first with RA-like pain, others with severe gastrointestinal problems. It’s a very complex systemic disease so please don’t believe doctors who say you don’t have it unless you’ve had the lip biopsy.

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Thank you for your reply. I was disappointed when I was sent away without even having a tear test done on my eyes. The doctor I saw blamed my dry eyes and mouth on my medications but the dry mouth is a more recent symptom and I've been taking the same medications for years! They just don't seem to want to take on any new patients nowadays. 🙄

I don't want to add another autoimmune condition into the mix but I do really want some treatment. My hand and finger pain, swelling and stiffness is getting worse and worse and my arms and hands jump and twitch involuntarily all the time. I can barely use my right hand now, which is very scary and I just want some treatment.

I already use viscotears and purchase my own special tablets that stick to the gums at night, to increase saliva. I've had gastro problems for years too.

I feel really bad for Lisalou19, it must be incredibly frustrating having been given such a vague diagnosis. 😔

Do you have sjogrens then and if so did you have to fight for the diagnosis?

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I do have seronegative Sjögren’s. But I just replied at some length to Kelly below so won’t hijack Lisalou’s post anymore however my long reply to Kelly is meant for you too! 😊

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Never hijaking. For all to add useful input. My eyes are so bad lately, dry I struggle to read lots x

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Thanks x - this is why I only write or read posts comments with loads of paragraph spaces now. Any long rambles without proper para breaks and eyes and brain say no!

Hyloforte preservative free drops and VitA POS and a trip to optician to get extent of dryness checked make sure no damage to eye surface - all highly recommended! Xx

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I'm.picking up those drops today and had my eyes tested yesterday.

She said I hardly blink, well that's because at times it just doesn't feel comfortable to blink.

My eye sight hasn't deteriorated which is a positive but they don't respond well to light which would explain the the pain in my eyes due to sun light.

They did try and sell me the prescription sunglasses but for now I just stick to wearing my glasses under my shades.

I most likely look like a nuttah to most 😂 but hey it works

Xx

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I have punctual plugs now and prescription shades plus transition varifocals. But the glasses cost a small fortune and hey as you say if it works...😎👍🏻

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If you see some strange women with 2 pairs of glasses on, that will be me 😂😂x

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I’m not sure I would agree with you 100%, Twitchy. But I think at some point the differences between what you say and what I say will become minutiae, the differences will be so tiny. I will say I’m always up for learning more.

The only reason I mention this is I myself have been diagnosed with Sjögren’s syndrome. It started out as simply sicca syndrome, but did progress.

I had the paper blot test- the schirmers test. Bone dry. I already have quite severe APS, a RF of 512 where 7 is the upper most limit of normal, one positive ANA, so two of my Rheumatoligists switched it over to Sjögren’s syndrome. No lip biopsy. Im on very high anticoagulation, so really it wouldn’t be in my best interest.

My Rheumatoligist says we know you have a multitude of autoimmune diseases, a touch of this, a full helping of that, a sprinkle of the other... We will deal with them as we need to. You are starting Rituximab. It helps all of them. We add to the cocktail as needed, make adjustments as we go, keeping a very watchful eye.

I’m aware that Dr Price of Swindon is very keen to do lip biopsies for confirmation of Sjögren’s. ( I like to call her the Sjögren’s whisperer!) I really agree with her thinking and approach- who wouldn’t? Her proactive stance in halting damage ( especially in neurological Sjögren’s) by instigating treatment 10 years earlier than currently generally prescribed-perhaps even biological, is music to my ears. If lip biopsies are the vehicle to accomplish this task, I’d like to see patients queue up around the block!

It’s just that in some cases... it’s not necessary when its become obvious, blood work is substantial enough in light of symptoms, and there are other limitations to a biopsy such as anticoagulation involved.

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Of course I agree with this more sophisticated interpretation of yours Kelly. But you are only really talking about your case - which is at very the classic/ typical end of the SS spectrum.

I mean why would those who are anti Ro & La positive with compelling classic symptoms of SS need to be diagnosed by lip biopsy? Or those who already have one or more rheumatic diseases? You are quite right about this.

And yet people like me often get missed as having Sjögren’s as their main disease by many rheumatologists because, after a lifetime of dryness, we don’t even really notice our Sicca. If SS has taken our thyroid already, as it had with me, then we don’t notice the dreadful fatigue that much either.

If Livedo and Raynaud’s suddenly arrive then these are shrugged off too unless we have had a stroke or make the connection with series of miscarriages.

So the first overt manifestation might be in the form of another rheumatic disease that SS is mimicking such as RA or Lupus. This is how it started showing for me and according to Dr Price this is quite common. It also can imitate MS she explained. It’s a real cuckoo disease!!

The only point of doing this quite invasive little procedure of a lip biopsy is if a person’s bloods are normal/ negative but there are other pointers. Or if a person has agreed to take part in a clinical trial for Sjögren’s requiring a lip biopsy of two perhaps.

So what I really meant was that no rheumatologist can exclude Sjögren’s by blood work alone. And symptoms of sicca aren’t always as bad as online information usually suggests - especially in younger people or those like me who have had sicca since we were young.

I think I’ve probably had Sjögren’s with Hashimoto’s since I was a child because my lip biopsy was 100% positive. Unlike for many people living in England it’s very hard in Scotland to find doctors who know a bean about Sjögren’s - let alone the seronegative form.

And we have no centre of excellence for rheumatic diseases to head for under devolved NHS rules. So I’ve had a horrible time over the past 8 years since being misdiagnosed with primary RA. I’m now told that we Sjögren’s patients are being dispatched back to our GPs care as there’s nothing more to be done for us. And to add insult to injury most, if not all neurologists in Scotland, describe anything they don’t understand as functional - or FND.

And as most of them don’t understand rheumatic diseases with neurological presentations they opt for FND very quickly because all our systemic fatigue related symptoms seem to correspond with their new catch all term for long discredited Freud’s conversion disorder theory. If they consult their rheumatology colleagues they might be told “no we haven’t seen them with sicca” or “we don’t think their Sjögren’s would explain these extensive weakness, twitches and tremors”.

It’s becoming almost impossible for rheumatologists in Scotland to get lip biopsies done so the likelihood of seronegative Sjögren’s being misdiagnosed as FND or Fibro or ME is huge!

This is why I worded the facts about diagnosing Sjögren’s in quite a blunt and oversimplified way. Sorry! X

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Did you have a family history of auto immune disease? And your patient history? Is it remarkable for multiple miscarriage?

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My dad has RA, 1 brother had thyroid disease and the other has celiac disease

Only 1 miss carriage way back, 18 years ago x

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Hi, I have only had Livedo Reticularis mildly, and not very often, however what I will say is that not everybody passes the test for Hughes Syndrome/APS straight away, I was one of those, I enclose a paper for you, it was also the case early on with my Lupus testing, I have many autoimmune diseases. hindawi.com/journals/jir/20...

Be aware that many of us have problems with our Thyroid, often missed due to the scanty testing done, many of us order our own tests and take those results to the GP or hospital if it shows something, including in some cases low D, B12, Folate and Ferritin. Any of this not right can add to the other problems and make you feel worse. MaryF

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