Unprovoked DVT - possible APS

[Zara-LouiseD]

Hi Everyone

I was diagnosed on Tuesday with a thrombus in a vein somewhere below my collar bone which is causing my external jugular vein to distend. Apparently it’s in an extremely unusual high flow area of the vein for a clot to develop, and I initially was sent home with a clear CT until the A&E doctor decided to get a vascular specialist to review the CT and I was urgently called back the following day for an ultrasound.

They asked me which Covid vaccine I’d had, and although I did have the AZ, I’m slightly out of the parameters as it’s 36 days after my second jab and also no thrombocytopenia.

They took 7 vials of blood and are testing for APS among god knows what else because a couple of years ago I had a weak positive for anti-cardiolipin antibodies. At the time my rheumatologist concurred that I might have a mild connective tissue disorder (probably SLE) but laughed at me when I asked him if the weak positive might suggest I had APS or SLE and could it be the cause of the migraines that I’ve suffered since I was 10yrs old. He said it was only IgM and probably virally provoked.

They have put me on apixaban indefinitely and it seems to have caused joint pains that I haven’t had for quite some time - has anyone else experienced that with this drug?

So now it’s a waiting game to see what these blood tests come back with, whilst worrying if my clumsy self is going to end up with some serious bruising!

[Ingrid1234]

Don’t wait! Looks a pretty big clot to me. Take aspirin which could help dissolve it.

Take care.

Checkout:

nhs.uk/medicines/low-dose-a...

This clot needs addressing.

…”but laughed at me when I asked him if the weak positive might suggest I had APS or SLE ..”

A laughing medic!😩😡

Get yourself to A&E ASAP!

❤️

[Jmiller623 in reply to Ingrid1234]

She should not take aspirin on top of a DOAC without consulting with a physician. This would increase her bleeding risk which is not negligible. Also, aspirin is more effective for arterial clots and not so much for venous ones. I would not offer direct medical advice like this without consulting with a professional healthcare provider first. What you are seeing in the picture is not a clot, it is jugular vein distention from blockage below it.

[Ingrid1234 in reply to Jmiller623]

Aspirin for prophylaxis?sciencedaily.com/releases/2...

🤔

[Jmiller623 in reply to Ingrid1234]

There actually is no solid data proving that you can prevent clots with aspirin. There are a lot of observational studies and large cohort meta-analyses, which are prone to bias based on the fact that it’s not a real RCT in real time. I take 325 mg and one of the foremost experts in this topic, Dr. Michelle Petri from Hopkins, told me not to take aspirin as there is no data that shows aspirin to be a preventive of clots in aPL patients and 100% shouldn’t be used to treat active clots. ASA is used in those with proven CAD, DM2 or aPL among a few other indications, but never to treat a clot. It also confers a real dose dependent bleeding risk esp when mixed with other blood thinners. Despite what ppl think, aspirin has real effects on platelets that is irreversible. Unfortunately, it’s not something to take willy nilly for us.

No aspirin in aPL without documented clot is an accepted formal guideline for all hematology and rheumatology. That being said, I am aPL positive without APS. I find aspirin makes me feel better and this could be for various reasons - anti-inflammatory and possibly anti-platelet effect. I take 325 mg but I know what the data shows. Not to be snarky but you’d benefit from reading about the difference between different scientific studies and how they impact the medical community. Findings must be reproducible to be accepted. This takes time and it may show benefit from ppx aspirin but nothing has proven this yet.

[Ingrid1234 in reply to Jmiller623]

That’s why there’s a question mark and a thoughtful emoji 🤔.

For blood thinning prophylaxis it’s usually 75mg. Your taking 325mg daily? is pretty huge.

There are serious gastric side effects with aspirin.

Personally I’m not an ardent advocate.

[Jmiller623 in reply to Ingrid1234]

Yes. I take 4 enteric coated 81 mg pills. Never have/had gastritis. Hematologist agreed that this was appropriate given that I have persistent LAC which is high risk. I also have persistent livedo, acrocyanosis when I’m at my worst. Plaquenil and full dose aspirin work well for me and keep livedo at bay, which I guess is a good measure of my LAC activity. Otherwise, I have a lot of classic SLE symptoms and NSAIDs help. 325 of ASA is no worse on your stomach than 500 of naproxen IMO. I only take that one dose of ASA everyday and no other NSAIDs because of kidneys.

[KayHimm in reply to Jmiller623]

My neurologist, the vascular one, agrees with what you said. She told me from day one that there was robust evidence to show that low level aPL without a clot did not benefit from aspirin. She kept me on low dose aspirin because of family history and added statin.

I noticed an improvement on the low dose aspirin and was not on it for symptom relief. So it can make a difference. That is a whole different story!

xk

[happytulip in reply to Jmiller623]

Well said.

[happytulip in reply to Jmiller623]

100% agreed. Never take aspirin on top of an anti-coagulant unless specified by a doctor.

[Zara-LouiseD in reply to Ingrid1234]

Thanks for the info

I can’t take aspirin as I’ve had gastritis from taking diclofenac in the past. I take it on rare occasions like before a long flight but otherwise it will irritate my stomach.

The external jugular is quite distended but the clot is lower down somewhere below my collar bone.

The A&E doc isn’t laughing after finding this clot - it was my rheumatologist that laughed at me when I queried the weak positive anti cardiolipin antibody test as an indication of possible SLE (given other symptoms I have including years and years of migraine)

I’m going to contact my doctor about these tablets as I’ve felt crap since o started taking them and I have a pressure headache that goes away if I stand up for any length of time, and comes back if I sit down. I didn’t feel lethargic and sick before I started taking them.

[Jmiller623 in reply to Zara-LouiseD]

I don’t think this is from the apixaban. I think your headache and dizziness is from the clot and it’s perturbation of the blood flow to your brain. Let your provider know about these symptoms.

[happytulip in reply to Ingrid1234]

She has explained that she is on apixiban and has been to A&E and has been seen by a vascular team. An initial diagnosis has been made and apixiban treatment given. To suggest apirin as well as apixiban is dangerous.

Zara, it's a waiting game I:m afraid to see what your bloods show. And you are correct. Your DVT is in a very unusual place. I don't expect it would be a full occlusion otherwise they may have considered interventional radiology, kind of like going into fish it out with a mini corkscrew device. Clots are sometimes in that position when associated with a PICC line.

I'm pleased that you are getting the correct medical care and I am sorry that you weren't taken seriously in the initial stages.

Good luck and keep us posted.

[Zara-LouiseD in reply to happytulip]

Thank you - I will keep you all posted!

I think it’s about 6 weeks before I’ll know anything further.

[Jmiller623]

Probably a clot in the subclavian vein. Your doc is right… very rare. However, 30-40% of SLE sufferers are aPL positive. 50% will go on to develop APS over 10 yrs. I am aPL positive after having bacterial pneumonia but I do no have APS.

If they do find you positive for aPL, it needs to be checked again in 12 weeks to diagnose with APS. If APS, they will likely switch you to lifelong lovenox or warfarin. While your other doc is right, it may be IgM mediated post vaccination/infection, I’d argue since you have a CTD that it’s nothing I’d be brushing off and messing around with. Hope you find answers soon and the apixaban provides relief. I have never heard of it causing joint pains. Makes me think if you have mild lupus, maybe it’s deciding to rear its ugly head.

So sorry for all of your troubles. Sending hugs. ❤️xx

[Zara-LouiseD]

Thank you for the info

The A&E doc was concerned about the previous weak positive- it was my rheumatologist who had laughed at me, but prior to this DVT.

I don’t know why they’ve given me apixaban if they are testing me for APS and it’s contraindicated?

I’m going to call my doctor shortly as I have had an awful (but not severe like migraine) pressure headache since I’ve started this tablet, but the headache goes away if I’m stood up for any length of time… and then returns if I sit down! I feel like crap too and I didn’t before the tablets.

[DRunnerchick in reply to Zara-LouiseD]

Z-L,

Please do consult with your doc, but as as an aside, I am currently being evaluated for sinus thrombosis and my neurologist informed me that when I stand and H/A feels better(anything not laying down) related to increased intracranial pressure. Just a thought…not meant to override any medical advice but to calm you somewhat.💐

D🏃🏽‍♀️

[happytulip in reply to Zara-LouiseD]

They would have put you on a treatment dose of apixiban to try to get rid of the clot. Thrombolytics require inpatient stays and are given in a much more acute setting, for example to bust a stroke producing clot in an emergency.

The risk with apixiban is lower than thrombolytics and because you don't have a confirmed diagnosis of APS (yet), they have to treat your clot. They can't just leave it.

I can't say that I have heard experience of joint pain with apixiban but given the location of your clot I would mention your headaches to your healthcare provider/GP tomorrow as a matter of priority.

You are getting the correct treatment and follow up for now.

Take care

[Jmiller623]

The clot is likely in her subclavian/brachiocephalic vein which travels just under your collar bone. It feeds into the veins that are on the side of your neck called jugulars. Ever heard of go for the jugular? 🤣 Thats because it’s one of the largest, most superficial blood vessels in your neck. If you lie flat and turn your neck sideways, you can see it pulsate. We actually use this pulsation is medicine to see how much extra fluid you may have on you.

In Zara’s case, the clot below is not letting her jugular drain appropriately. Our blood vessels function like a plumbing system. When you get blocked up somewhere downstream, it causes back up and flood upstream. Her blockage/thrombus is sitting below jugular which is causing more blood to pool in her jugular vein thus distending it, which makes it look enlarged. Since it’s so superficial, you can actually see it swell but it’s not where the clot is. The clot is below it… see illustration for landmarks.

Anatomy

[happytulip]

It will be imaged on the CT scan.

[LInnieOAP]

Hi Zara Louise,I am sure you are right about Apixaban causing knee pain.

I have been taking apixaban for approx. 18 months now with no other drugs. I’m in my late sixties and was diagnosed with SLE and APS in my twenties, I miscarried many times but now I have no antibodies detectable.

I was switched from warfarin to apixaban after numerous serious nose bleeds.

Since being on Apixaban I have serious weakness and pain in my knees, I’m a walker and fear I’m not going to make it back to the car sometimes. It is also affecting my shoulders and wrists. I think you are absolutely right, Apixaban drains energy from muscles.

I’ll address the problem after the covid pandemic as I know I need anticoagulation due to a previous embolism, I’m reliant on my GP which is hopeless at the moment.

As Apixaban is likely to be long term for you address it ASAP especially as you have access to a consultant at the moment.

I was a migraine suffer when I was young too, all resolved now.

Also the bruising with Apixaban does not appear to be as bad with Warfarin, I’m pretty clumsy too so maybe you needn’t worry too much about that.

Very good luck to you and much sympathy to you as I know how grim you feel some days and on top of autoimmune problems as well it’s just difficult to keep positive.

Lynne.

[Zara-LouiseD in reply to LInnieOAP]

Thank you Lynne

Sorry to hear that you have had a lifetime of trouble with SLE and APS.. and are having problems with Apixaban too!

I queried my terrible headache and how bad I was feeling since the Apixaban and also the contraindication relating to the possibility of APS. They sent me back to hospital for a head CT (which was thankfully clear) and have put me on Tinzaparin? Some kind of heparin injection at least until further tests come back.

I do hope that something resolves my migraines too as it is my biggest issue in life generally.

Thank you for your message and I hope you get some relief from your muscle weakness and joint pain. It really is awful when these things sap the joy from the pleasures we have in life.

Take care

Zara x