Lupus and Hughes Syndrome

[SNOWWHITESHELLY]

I was diagnosed with SLE and Raynauds 6years ago. These have been fairly well controlled by drugs over the years. However, recently I have developed the dreaded lace-like rash all over my arms/legs known as Livedo Reticularis, has anyone else experienced this? If so, what was the outcome?? I have had blood tests today to check for sticky blood etc. I can't bear the thought of being diagnosed with another "problem". Can something like this just happen suddenly??? Any advice would be appreciated.

[Sher78]

It's a pretty common problem with lupus & raynauds, as well as with many other AI conditions. Generally down 2 u're circulation. I personally wouldn't panic about it, I have long got used 2 my 'corned beef skin'

[SNOWWHITESHELLY in reply to Sher78]

Thanks for reassuring me :0) I just look half dead and sooo purple?!! Keep well x

[MaryF]

Hi there, it is a very good idea that you are being tested, and it can be a significant marker for Hughes Syndrome, it is better to be correctly looked after if you do have Hughes than to presume it will just go away. However it is vital that you see the right professional with Hughes Syndrome knowledge, I do have access to a data base, if you need one for referral. Best of luck. I have both, plus three other things! Mary F x

[SNOWWHITESHELLY]

Mary - thank you for your reply. I have just come to terms with my existing illnesses so to be tested for another NEW one! Has shocked me somewhat!! Thank you for your advice, I will know more this Friday when I get my results. Thank u xx

[CMac13]

Hello there, not sure if should 'add on' here now, or start afresh with new question. Just I'm in a similar place to u.. I've Lupus & fair no. of associated conditions, including Raynauds etc. I've had livedo reticularis for a few years & I was started on 75mg of aspirin round then, but no one mentioned Hughes. Like a lot of u, I've had lots of different things & I'm on dozens of meds, inc steroids (11 yrs), plaquenil, Azathioprine, Biologics etc.

Anyway, I've lots of rashes but also recently weird skin ulcers- when biopsied by Dermatologist, initial report came back showing inflammation & thrombosis of veins (plus fibrin). My medical history ties in fairly well with APS, tho I've not had lots of miscarriages- just many Gynae problems, but no one, except dermatologist, has mentioned APS.

My rheumatologist isn't dealing with this, doesn't know about it, & GP certainly won't do anything.

V v long, I'm sorry! Question is- what can I or should I do? I hate making fusses & docs complain I'm too 'complicated' already (multi organ involvement). I feel pretty lonely & bit lost as smaller support network. Sorry to Snow White Shelley, if I'm not helping u- I realise how frustrating every new development in these diseases are. So lots of sympathy & hope that maybe u don't have APS (or v mildly if u do)...

Take care XC

[MaryF in reply to CMac13]

You need to google Hughes Syndrome, there is help out there, and around the UK there are medical professionals who deal with this, and have that knowledge, it helps to know where you are located, some patients manage to get referred to St Thomas' in London, and others go privately to London Bridge in order to jolt their local NHS into action, I certainly had to do this. Mary F x

[CMac13]

Thank u very much for replying, Mary. I've noticed u always give great advice! I'm from outside Belfast (N. I), plus wheelchair bound & on oxygen, so it's pretty difficult to travel- tho I've heard fantastic reports of St. Thomas'. My rheumatologist has just retired, which is a real shame & all his patients will be in limbo with different Regs til next year sometime. I attend quite a few consultants, so my G.P would be loathe to send me to any more Docs (eg: haematologist) & I'm afraid for 'upsetting' the current rheumatology dept. by asking to see another rheumatologist.. I was wondering if it would be worth seeing someone like a haematologist & paying for some blood tests privately, just to help with diagnosis? What do u think? If u knew of anyone at all over here, I'd love to know.. (even Glasgow area, if not here.)

Also wondered if u've heard of Rituximab (Mabthera) being any good for APS? It's a biologic iv treatment I get for Lupus.

Thanks so much Claire x

[Slowmo]

Please can I ask about the corned beef 'rash'? I've always described my arms and legs as looking like 'chopped ham and pork', lol. But it now makes me wonder if there is something to it, my consultant asked last week how long i'd had the rash, but then with everything else I forgot to follow up that line of questioning.

Thanks

[1dayatatime]

I have had Sle with raynards and sticky blood for some time now. A while later my feet suddenly turned purple and over the years I developed what my rheumatologist thought many years was Livedo, the rash is mottled like and is all over my arms and legs, over the years it has progressed significantly and at my check up last year a registrar thought I had Vasculitis the upshot of that was being cut open so they could biopsy my legs, it turned out is wasn't Vasculitis thankfully. I was worried that no one really was understanding what was happening to me so begged my GP for a referral to the lupus unit at st Thomas's hosp to see the professor there. He went over everything very thorough ran 21 blood tests etc, he also made sure I was seen by a dermatology consultant and they decided the rash was not Livedo but Telangiectasia which is essentially the appearance of the small dilated blood vessels near the surface of the skin. Perhaps this is what you may have and I would strongly suggest you have the rash Looked at by a dermatologist, they should also photograph your rash to monitor the progress over the years. Also in terms of wearing skirts in the summer or going swimming, your hospitals dermatology unit should run a camouflage clinic where they can give you specialist make up to cover the rashes which is very good indeed and you can get it on the nhs prescribed by your doctor, it is also available to buy in boots. I hope that helps and good luck with your test results. Remember you are not alone and we are all here to support you xx

[SNOWWHITESHELLY]

Thank you all for the advice. Unfortunately my GP messed up with my bloods being sent in the wrong vials to be tested!! Last week they couldn't get any blood out of me so I'm going to the hospital next week to let them have a go!! Keep well all x