Any advise or information please

Any advise or information please

Hi I'm new to this group. A lovely person from systemic sclerosis told me about it I have overlap connective tissue disease. I have really bad raynaulds with it. I have also been told I have IGM anticardiolipin antibody positive. I'm not sure what that means. My knees turn black and my legs goes Lacey looking could this be the cause ? Any info would be greatly appreciated

Thanks

Sam

18 Replies

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  • Have you been tested for Hughes disease aka Antiphospholipid syndrome? Where are you from state/country? Many times people with this can have the Lacey like rash

  • I'm from London in the U.K. They haven't tested me for anything to do with the igm anticardiolipin antibody because they said I've never had a blood clot Doesn't sound right to me ! I'm being treated for systemic sclerosis Maybe I should ask about it next time

    Thanks you for your reply

  • Hi Sami13 and welcome to our site!

    I have read that you have been referred to a Rheumatologist some months ago. Did you see that Doctor who could understand both Lupus and HS/APS?

    Talk to that Doctor who took the ANAs and who said you have positive IgM Cardiolipin antibodies as around 50 % with those antibodies may have Lupus and perhaps not HS. That you have to find out.

    I have all three antibodies and HS and have had the "Livedo Reticularis" many times before anticoagulation but that does not look like that at all. The Livedo Reticularis with a special pattern skin is said to be a sing of HS/APS. Look it up! Hope this could help a little.

    Best wishes from Kerstin in Stockholm

  • Thank you. I'll look it up. The doctor I see is a systemic sclerosis doctor. I will definitely bring this up with them

    Thanks again

    Sam

  • Ok, if they will not help you I think yous should find that Rheumatologist you talked about. He will understand Lupus and also HS/APS as well as other autoimmun illnesses that often go "hand in hand".

    Do not skip it but investigate!

    Kerstin

  • Thank you kerstin

    Sam x

  • Livedo reculris (sticky blood) is what that lacey rash is on your knees and legs mine looks like my knees are bruised badly but there not its just my blood clotting up . Invest in a heating blanket and thermal pants

  • Thanks I will give them a look

  • Hi falling2peices.

    I must insist on that the photo above does NOT look like Livedo Reticularis.

    I have had that and the Specialist has seen it even if not so clearly at that moment.

    It is a fishnet-like pattern in blue/violet/red and when the INR was very low one could see it clearly. After a shower very clear. I had it on my thighs and upper arms.

    After I have been properly anticoagulated I never have it.

    You write that you have Fibro and I wonder if you have got Hughes Syndrome also. Please see a Specialist if you have clotting bloods and ask you GP to take tests for HS/APS if you have got symptoms and ask for a referral.

    Best wishes from Kerstin in Stockholm

  • Hi im sorry when i replied to this i didnt see a photo but i do now and mine looks like that but like you said its more of a pattern around my knees but my knee is like the phot and more red (expecially after shower)and its purple .

  • Hi im sorry when i replied to this i didnt see a photo but i do now and mine looks like that but like you said its more of a pattern around my knees but my knee is like the phot and more red (expecially after shower)and its purple also mines a everyday thing and can be painful. I have many photos but im not sure how to share them.

  • Hi falling2peices,

    My Livedo Reticularis was not painful at all.

    It is like a fishnet blu/red/violet pattern on a rather large area. I could not see it on my knees but my thighs and upper arms . The fishnet was perhaps 3-6 cm in diameter and a lot of them (both legs and arms).

    Kerstin

  • Yes its on arms and enitre legs but not bright like my knees get. Perhaps my fibromyalgia is the reason mine hurts

  • Hi falling2pieces I looked at that photo and thought 'did I post that picture of my knee?'

    I test positive for LA, have prominent livedo and raynauds. I have recently noticed a large bruise on my knee - no trauma caused it. It went away and now it's back. I have to agreed with Kerstin, not what I would describe as livedo.

    I'm 29 weeks pregnant, only on aspirin. You seem to be familiar with this, could you explain further what you mean by blood clotting up?

    Thanks

  • Hi Sam, welcome. I'm glad u found us. This group has several times saved me and I like to think I contribute too in return.

    I understand the auto immune disorders reasonably well as: my father has scleroderma and bad raynaulds and is seen locally and at The Royal Free Hospital in London. I have Sjögren's, Lupus & Hughes as well as Fibromyalgia and am seen locally (SE England) and also at Guys/St Thomas. My brother has RA and is under the same local specialist as dad and I.

    I have had to fight very hard to obtain initial diagnoses and was fobbed off with CFS/ME for years prior to being tested.

    I find it useful in consultations to take a body map I print a body outline and mark in it every symptom I have - once u start it's amazing how many u have.

    I give a copy to the specialist and they are able to see exactly what is going on

    Try to take someone with u to all appointments to write down what's said

    I also type out a list of things I need to discuss. Limit it to the most important things do three copies (one for them, one for u and one for ur companion).

    A good consultation leads to u Getting the right tests and correct diagnosis which will be the key for ur treatment.

    I have other tips to get the most out of an appointment!

    Message me if u want a chat

    I hope u get ur questions answered! 💋

  • Wendywoo thanks so much for the message. Your family certainly seem to have been through it. You have given me a plan for my next visit (making lists/notes). That will definitely help. Where about are you seen locally? I'm in Essex I get seen locally at st Margaret's in Epping I think the thing I would like the most is a doctors time just to listen I always feel so rushed.

    Thanks again

    Sam x

  • SE Kent near Dover

    Yes do ur prep. U have only 10 minutes to make an impression

    Also type out ur current meds list and a list of actual diagnoses (dates etc too if u can) ask ur GP. It saves them asking those questions and writing it all down. More time.

    If u can get blood tests and results to take that's great: FBC LFT vit D vit Bs etc

    Also an eye test report with a field of vision test too. Essential before certain meds can be prescribed. (Saves time waiting for meds) 💋

  • Hi and welcome

    I agree with what my colleague, Kerstin, has advised you.

    Below is a link to a list of UK APS/HS consultants:

    healthunlocked.com/hughes-s...

    Please seek a referral to one near you, or self refer to Prof Hughes or one of his team, privately, at The London Lupus Centre, London Bridge Hospital.

    Let us know how you get on.

    Dave

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