APS and Lupus SLE D Dimer Test

[Bobbydoodle]

Hi

I have APS and Lupus SLE.

I am on warfarin and hydroxychloroquine.

I have near enough constant feelings of tingling, numbness and fluid in my legs and I sort of normalise it now as part of me. My legs wake me up at night as they are uncomfortable etc

The reason for my post is, my left leg feels different at the moment, as in more tingly and I’m more aware of it, it’s slightly more swollen than my other leg and feels warm.

As leg pain is constant for me and I have a high tolerance to discomfort (And this has happened before) it’s hard to know if I should get checked for a DVT when the discomfort slightly elevates.

I’m considering getting it checked but I know they’ll do a D Dimer test and I am sure I read on here (can’t find in searches now) that they are useless in APS patients? Is that right? I’ve only had D DImer tests in the past never an ultrasound as when the test comes back negative they don’t scan.

If I go I want to armed with the right questions as I always find the medical staff usually don’t know much about APS and ask me what it is etc.

Any advice appreciated, Thank you 😊

[MaryF Administrator]

Hi, it is very important that you seek some medical help, especially as there is a change in that leg. Please phone your GP. I would also get in touch with your main Hughes Syndrome/APS consultant, phone and also send an email.

If you feel unheard when attending hospital please do take any relevant letters about your condition and also somebody who can help you fight your corner, as they may need to so more than a just a D Dimer. You may need an ultra sound or venography done.

Please phone for help and advice as soon as possible, either with your GP or 111 if in the UK. Be aware also that with this condition we are likely to have others, for instance an untreated Thyroid or a poorly medicated one can cause fluid retention, also low vitamin D can cause inflammation and sore limbs, and add to that B12 deficiency. A lot of us end up ordering our own detailed tests for Thyroid, as often GP's and even specialists will only use the TSH test which is not detailed enough. Please also get your Folate and Ferritin checked also, however at this moment in time, you need to check that you do not have a clot in your leg. MaryF

[Bobbydoodle in reply to MaryF]

Thank you Mary. I don’t actually have a specialist for the APS as it was diagnosed by a stroke specialist after I had a TIA and he put me on warfarin for life and discharged me. I have actually asked on here for recommendations for a APS specialist as during COVID I felt a little wary not having one so once things calm down for the NHS I will ask for a referral.

I was more recently diagnosed with Lupus and I do have a specialist for that who I saw before lockdown and he ordered an echocardiogram and CTPA when I saw him in March but I’m sure thats delayed due to COVID.

[MaryF Administrator in reply to Bobbydoodle]

Hi if you need the recommended specialists again, do let us know, for your area, it is better that your GP refers you to one who actually understands the entire condition. ghicworld.org/medical-advis... MaryF

[Bobbydoodle in reply to MaryF]

Thank you I have just sent a message to my GP and asked for a referral to Dr Bruce after your message as last time I asked on here I thought I’d wait til everything calms down but I may as well start the ball rolling now as I’m sure it won’t be a quick process.

And I have also emailed my Lupus doctors secretary to chase up the tests he ordered.

Now to keep an eye on my leg today and decide if I should nip to A&E to get it checked.

Thanks again 😊

[MaryF Administrator in reply to Bobbydoodle]

Ring 111 and get assessed and triaged over the phone, then they will more than likely give you a timed appointment there or at a treatment centre. MaryF

[KellyInTexas Administrator]

I don’t know if they are always useless, but ... yes. They can be. APS patient don’t break down fibroginin in a predicted , standard way.

I can have active clots and normal d dimers.

[Bobbydoodle in reply to KellyInTexas]

Thank you, that makes sense I was sure I’d read this. This is why I sometimes dread dealing with some medics as they don’t understand APS and when I try to explain I don’t think I do it just as my knowledge of it is sketchy to say the least.

[Jumper99]

You are right. The d-diner test is not reliable for APS patients because it is a clotting condition. It measures something produced by clots in the blood but APS produces small amounts of that too because it’s a clotting condition. It’s not reliable for other clotting conditions either. That’s what I’ve been told but is different from Kelly’s explanation so she may well be right not me. I will go and look it up! A consultant about 10 years ago used it as a ‘pointer’ when checking for a PE but when I asked him about it, he did admit it wasn’t reliable.