D Dimer positive not a PE is this lupus flare ?

[Christie22]

Anyone experience of this ?

[Tillytop]

Hi Christie,

I have Rheumatoid, Sjogrns and other not fully diagnosed autoimmune stuff and FYI I was told that D-Dimer can be artificially raised by such conditions so on its own it’s not a reliable indicator of blood clot/DVT as it might be for someone without these conditions. When this has happened to me and docs have decided I don’t have a clot (usually from thorough symptom checking and/or scan of the affected area) the assumption has been that raised D-Dimer is an anomaly and therefore not relevant. Not sure I’ve explained v well sorry but hope maybe this is helpful is some way. Kind wishes, Tillyxxx

[Christie22 in reply to Tillytop]

Thanks yes that makes sense I ve asked for an appointment with my rheumatologist because of all my recent issues

[MissusTee in reply to Christie22]

I've had a positive one, there was no dvt and I have 4 autoimmune problems so they weren't too worried about it.

[Christie22 in reply to MissusTee]

Thank you , I am still in the realms of unsure diagnosis rheumatologist indicated immune system disorder of type prescribed Hydro I ve had significant issues could be flare could be reaction to hydro but ddimer was positive dr in hospital indicated it could point towards lupus which has always been my thought ..I appreciate you taking the time to message

[Christie22]

Thank you I will that’s so helpful appreciated

[Bacardibabe76]

Hi

I have sle and anti phospholipid syndrome (sticky blood) so I am high risk for clotting.

My D-Dimer has been raised several times and each time I have had my legs, groin and lungs scanned for a clot. But so far they haven’t found any.

I have been told it just happens and is not a reliable indicator in me as it is in others but they still take it seriously and scan to be sure.

L x

[Christie22 in reply to Bacardibabe76]

Thanks for taking the time to reply I am still in the grey area of no specific diagnosis unfortunately blood tests positive for ANA so rheumatologist recommended hydrox I started this then two weeks later became really unwell skin rash headaches eye issues fatigue joint stiffness etc . Drug stopped but because of breathlessness I was seen at hospital

then the DDimer tested positive so ct scanned but clear other elements in blood raised too mono and eos . I am using a HRT patch and wonder if I should stop . Going to dr this morning going to request blood tests for Hughes and talk about the HRT patch I am waiting for rheumatologist appointment . I am so fed up of waiting for something to be defined instead of immune system disorder of type being as far as I ve got .

[Christie22]

Thank you appreciated the problem is I am not anti coagulated at all kidneys not happy either