D Dimer test

[Michellear]

Anyone find there D Dimer test is elevated when having a Lupus flare?

[happytulip]

Yes. Mine is usually elevated. It's important to remember that a D-Dimer can be raised for many reasons. It can be elevated slightly or be very high, within the 1000s. An elevated D-Dimer can also be linked to some medications. The reason for an elevated D-Dimer also needs to have any other symptoms taken into account

I hope that helps you

[Michellear in reply to happytulip]

Hi Happytulip,

Many thanks for your reply, that explains things. 👍

[KellyInTexas]

You might ask your rheumatologist to check to APS. It could be components of a clot, or just “ sticky blood” flagged the D- dimer .

As others have mentioned, can be for many reasons. When pregnant, for example, the blood is naturally a little “stickier” than non pregnancy state and d- dimer will flag.

[Michellear in reply to KellyInTexas]

Hi Kelly, definitely not pregnant and not had cancer or have cancer as far as I know! I will speak to rheumatology, something to add to all my symptoms!Thank you for taking the time to share and reply, much appreciated 👍 have a good day x

[Jumper99 in reply to Michellear]

I agree with Kelly. D-dimer is not an accurate test for those of us with APS or other clotting conditions. APS is a clotting illness and we can produce the substance that is tested for without having a significant clot. But it might be that APS would therefore cause a reaction measurable by the d-dimer test. x

[KayHimm in reply to KellyInTexas]

Kelly -

All lupus patients are tested for anti phospholipid antibodies at diagnosis. The question would be whether there is indication to re-test since these the antibodies can become positive over time.

K

[Melba1]

Hello, that’s really interesting and I had just the same question recently!

I had a bad flare and was in hospital with brain inflammation and general lupus flare and my d dimer was almost 3000. No clots and it went down to normal on next testing 2 weeks later. The only explanation I got was that it can be a measure of activation of the coagulation system as a reaction to inflammation which makes sense.

I think it’s related to me always having an abnormally quick clotting time (measured by APTT test) when I’m flaring badly or have sepsis. A haematologist did more advanced blood tests and found I had abnormally high factor 8 (part of coagulation/ clotting) which he explained as my body responding to inflammation from the lupus. Might be a good idea to check your past clotting tests? They do APTT quite routinely.

I also get a lot of bleeding when flaring, especially blood vessels in legs and arms bleeding and bruising under the skin, and kidneys, nose and eyes bleeding recently so wonder if it’s all connected. Although as the measurement shows clotting seems opposite to bleeding! Although maybe the excessive bleeding then leads to lots of little (harmless I guess) clots which may lead to high d dimer? Do you get bleeding or vasculitis too?

Has you d dimer been elevated a lot in flares or only just noticed?

It’s often useful to have a marker of disease activity and hopefully it just means inflammation and resolves once over worst of flare X

[Michellear in reply to Melba1]

Hi Melba,Many thanks for your message. Wow sounds like you’ve really been through it! Hope you’re well and rested at the moment

I haven’t been diagnosed with Lupus as yet waiting to see Rheumatologist, but believe I have a lot of the symptoms.

Had COVID 2 months ago and for the last month feel like I’m going through a flare, fatigued, joints ache, butterfly rash, UTI, heart rate up to 180 when I walk round house and breathless.

A and E suspect inflammation of heart or previous minor heart attack and advised D Dimer raised, I suspected it could have something to do with Lupus !!

Thank you for sharing your story. Take care. Michelle 👍

[Ar29980]

HiFrom personal experience I can tell you that having the complication of nephritis can cause a false positive D-dimer test and it is often dismissed. But lupus makes your blood thicker and you are more likely to suffer from clots than others - even if you're on blood thinners.

However, with a D-dimer of 21,000 but no clinical signs of a DVT (redness, hot, swelling, throbbing) I was told after a scan I had no clot and sent home - I could hardly put any weight on my left leg.

A week later that 1 clot had turned into 3 and I was admitted to hospital as an emergency so if you suspect a blood clot, insist on getting a doppler scan and a 2nd opinion. They can, and do, get it wrong sometimes.

Good luck!

[Michellear]

Hi Ar, many thanks for your reply. Your message is very informative. Sounds like you’ve been through it! Thankfully I have no symptoms of a clot just breathlessness and CT scan came back negative for any clots on the lungs. It made me wonder if Lupus was a cause of the elevated D Dimer. Thanks again for your reply. Have a good day. Michelle xx

[KayHimm]

Do you know why the D Dimer test was done? I am only familiar with it from tests to rule out clot in the lungs after Covid. Do you have any symptoms like difficulty breathing or pain in your legs?

Do you know where your anti-phospholipid antibodies are positive?

Good luck with this.

K

[Michellear]

Hi Kayhimm,

Many thanks for your message. I’m still waiting to see rheumatologist to be assessed for Lupus.

I had covid in Dec. Since that time for the last month had breathlessness when standing and walking and raised heart rate when standing or walking round the house. GP advised me to go to A and E on two occasions. Both times found I have elevated D Dimer.

They also found I had a previous mini heart attack. Waiting to see cardiologist.

No pains in legs and CT scan was clear.

Only tests I’ve had is ANA which was 1:80 CRP 9:00 and anemic and low vitamin b and d

Thanks for your message and have a good day. Michelle xxx

[KayHimm in reply to Michellear]

I see. You have a lot going on. Really sorry you are going through this. The rheumatologist will do tests that include auto-antibodies that tend to affect clotting.

It looks like they are using d dimer to follow lupus patient with anti phospholipid antibodies, though it is still not clear how best to use it.

Good luck with your visits. Keep us posted.

K

[Michellear in reply to KayHimm]

Hi KayHimm,

Thank you for your messages. I will keep you posted!

Xxx

[Michellear]

Update on heart problems post covid! Advised I have hyperthyroidism after GP sent me to A and E after 13 hours of rate rate of 160 bpm plus. Still waiting to see rheumatologist