Update Re: Unprovoked DVT - Possible APS

[Zara-LouiseD]

As some of you had advised, I got in touch with my doctor about the awful headache I had since starting on Apixaban and that it went away when stood up … and generally feeling like crap.

They sent me to the hospital for a head CT - which thankfully is clear, and have put me on Tinzaparin? until further tests come back . They haven’t had the APS results back yet, but what they have got is still shedding no light on the cause.

They have said that they will have me back within 2 weeks to CT the rest of my body to check for any other possible cause or further clots…. I know they will be looking for tumours as malignancy is indicated in causes of sub-clavian vein thrombosis and 2 weeks is their target time in relation to cancer investigations…

I’m not worrying myself about it though, as APS is still a possibility and I’m not sure they can rule out that vaccine as a possible cause.

Anyway I thought I’d give you a quick update and thanks for the advice about going back to the doctor

[happytulip]

Yes, Tinzaparin is a lower molecular weight heparin (LMWH), similar to enoxaparin and deltaparin, please excuse spelling but I think I got it right.

It sounds like you are having an awful time of it but I am so glad that you got in contact with your GP and they sent you in for a CT head. To know that the CT head is clear is a relief. However, you have to await the other test results and further full body CT so its easy for me to say that.

The only thing that I can think to say is that you are getting the correct investigations and treatment. The Tinzaparin isn't pleasant and might sting a bit and cause bruising but it won't be forever.

Keep posting and telling us how you are getting on. I'm sure the medical team have told you what to look out for and when to go back if new symptoms develop.

When did you have the vaccine??

[Zara-LouiseD in reply to happytulip]

Yes it certainly does sting! I’m having problems getting my prescription as they’ve prescribed 9000 due to my weight and the vials are 10000

I had my second vaccine on 5th June and noticed distended vein Sunday 11th July

[happytulip in reply to Zara-LouiseD]

You might be expected to squeeze out 1,000 units as I'm not sure they come in 9,000 vials. It's years since I've given Tinzaparin but remember that some LMWH has to be adjusted for the correct dose. The alternative is to have two injections like a 5,000 unit and a 4,000 unit.

You are going through a very difficult time but keep going and keep posting x

[DRunnerchick]

Z-L,

Good news on the head CT! 🤞🏼on the rest. I hope the Tinzaparin isn’t harsh on you and does what is necessary. Self care is important. What one thing are you going to do for yourself today?? 💐🌻✨💫

D🏃🏽‍♀️

[Zara-LouiseD in reply to DRunnerchick]

Thank you 🙏🏻

I think the one thing I’m going to do for myself today is eat well and take a gentle walk in the sunshine.

I haven’t picked up my prescription yet and only had injection at hospital so I’m not sure if side effects of this one…. But good I feel sick! Fingers crossed it passes lol

[Zara-LouiseD]

Hi everyone - just a quick update….

I have now had all of my blood tests back, and had full body scans/mammogram to rule out malignancy and everything has come back clear! So no clotting disorders and no known reason for the highly unusual thrombosis in my subclavian and internal jugular vein.

I am only left now with the likelihood that it was caused by the Astra Zeneca vaccine, as they have admitted publicly that 66 out of 10 million people are getting venous thrombosis without thrombocytopenia as a result of this jab.

I hope you are all as well as can be.

Have a lovely day.

Zara