Vasculitis?

[Thereisalight]

Hi! I'm new here. I was diagnosed with Undifferentiated Conective Tissue disease ("mild"lupus like thing!) Last October but now i have tested positive for lupus anticoagulant (yay! 😓). Doc re-run test to check it was not a one off in Agust bit hes been away so I don't have the results yet. i worry they are positive and he has referred me to rheumatoligis/haematologist. My doc is a dermatologist as i presented with mostly with skin issues. He seems quite knowledgeable on the autoimmune disease. Since then i have had 2 mini bruises on my finger and a slightly bigger one but still small on my wrist. Not sure if these are lupus related vasculitis or could it be APS related. I am very clueless on lwhat to expect withAPS if i have it and what to look for and when to seek help for blood clots. Might not have anything to do but my wrist is a bit sore, like i sprained it. i did find myself pushing two kids on a pram up a long hill the other day so that could just be it. I am aware you cant diagnose but i'm too impatient to wait for doctor's response! what do you think? I'll put this on the lupus forum too. Any advice on how to prevent clots , and what to look for would be great!

[MaryF Administrator]

Hi and welcome, firstly where are you located? If in the UK we have a list of specialists, it is important to have a consultant who understands this disease completely. Each of us is different, some are affected in different ways, and may also have a mix of diseases. If your doctor is testing, it is best to do all three tests, which I add below, and on top of that to to test your Thyroid, B12, D and Iron levels. If not in the UK we will still endeavour to help as we have many members from all over the world.

With some of our members they have migraines and some milder symptoms, with others a history of blood clots etc, it is important to understand your medical history and also that of your family, often other family members past or present may have other autoimmune conditions and thyroid problems, or a history of multiple miscarriages and strokes and heart attacks at an early age. Fatigue is a feature of Hughes Syndrome/APS>

I enclose a brief outline of the disease, in that link there a section with the three recommended blood tests.

Shortly we will have an extensive website which will contain very good information.

londonlupuscentre.co.uk/hug...

MaryF

[Thereisalight in reply to MaryF]

Thank you. yes i'm aware of the 3 tests although I'm not sure if my doctor was planning to do tge LAC one first and then the others. I know he was planning to do all three anyway. I'm in Leeds and I'm aware of Prof Emery and from your posts I know there is a Dr Martin who specialises in this. My dermatologist is based withing the muusculoskeletal deparment and works alongside the Rheumatology team so if my disease progresses he will put me under their care.

There is not much auto immunology in my family altho my cousin has interstitial cystitis and low hormone levels and seems to have issues but has been tested for sjorgens and has had ANA and all negative. I do far have mostly issues with postnasal drip and/or reflux. all results normal so they are putting down to stress/anxiety.

How am i not to be stressed with 2 kids under 3, a job and this kid of diagnosis whilst waiting for results potentially something ever more life threatening such as APS.

I guess i just wanted to know how clots feel like. i'm aware of swellings, pain or redness in legs (dvt) migranes etc. I'm worried about tge things i won't notice really! And what steps i can take to minimise the risks of getting dvt, strokes or PE. i'm currently on no medication whatsoever and i know they might not medicate unless i have an actual clot. I'm just a bot scared about what this means for my future. serious chronic conditions are difficult especially when you have kids.

[lupus-support1 Administrator]

Lupus anticoagulant is a specialised clotting test.It's name is very confusing for doctors and patients alike as it has nothing to do with SLE.

If you are taking any blood thinning agents, including baby aspirin, you will be more likely to bruise. A vasculitis rash is different - and to be frank- no one can diagnose anything from a picture! Corticosteroids can thin the skin and make you susceptible to bruising but if you are worried - go to your GP. Don't rely on anyone else because only your doctor knows your medical history.

If you want to talk more about lupus - LUpus Patients Understanding & Support (LUPUS) is here and I will be very happy to talk with you. I can understand you want some answers, but only a specialist (and please make sure your rheumatologistis a specialist in lupus because not all rheumatologists are expert and some have never treated anyone with SLE).

You can always PM me here.

With good wishes,

Ros

[Thereisalight in reply to lupus-support1]

Hi Ross. Thanks. See reply above in response to some of the bits in your post. I'm already in the lupus forum which is fantastic. Even though i'm not diagnosed with it yet i know my disease could go that way so i keep a close eye on people's experiences (i like to be informed) and have had great support. It's such a difficult disease to deal with, diagnose and manage!