6 months on...

[AngelinaN]

Well last two weeks seen haematologist & rheumatolagist...still on xarelto for my blood but way below therapeutic range so now daily asprin too. Funny enough I feel bit better since asprin thrown in the mix - next bloods 15/7 - the fear of re clotting is exhausting....I want blood thinner than even skimmed milk.

however spine not so good an they found reason for some paralysis on right - I do have nerves impingement and see spinal surgeon 29/7 for options.

surgery has been suggested.

I want a 95% fit & active life as I am only 52

Read one of Graham Hughes case studies where APS patient also had spine nerve damage.....and according to his blog - being sufficiently anticoagulated seemed to improve both conditions...

mentioned this to prof Martlew and she did agree the case study matched all my symptoms exactly....it would be great if the outcome was the same to save me having operation on my spine

Well thats it for now...otherwise slowly slowly getting answers, and for the moment - pottering & resting due to health limitations

Angie

[Manofmendip]

Thanks for the update and good luck.

Dave

[Lure2]

Hi Angie,

You are on Xarelto and as I understand you have been that for some time. I do not understand how Xarelto is working (on warfarin) but I thought it would not be any problems to reach the therapeutic range like it is for warfarin.

It is very good that you see Prof Martlew who obviously know APS.

Yes I have noticed myself that being well anticoagulated and in range can improve a lot of symptoms. I have also read what Prof Hughes says about warfarin and to be well anticoagulated in general.

They wanted to operate for Carpaltunnelsyndrome and after anticoagulation it was gone. My bloodpressure is normal and Pulmonary Hypertension is stable. My "double vision" is gone like my loss of sight on half of the right Eye. Also no more Vertigo.

I wish you good luck on July 15 and hope you will be proper anticoagulated so you miss that operation!

Kerstin in Stockholm

[AngelinaN in reply to Lure2]

Thank you so much Kerstin

I may have to go back to warfarin and trial 3.5-4 INR (I re clotted at 2.8)

Rivaroxaban (xarelto) has therapeutic rang of 151-400 but I was on 15mg and only got to 60 - so then in May 15mg x2 and now level is 131

So now Asprin as well - have bloods 15th July and results 22nd

will see what happens.

so glad proper anticoagulation has helped some of your other symptoms

Angie

[Lure2]

Thank you for that info about Xarelto. You are soon at the right level now.

If you go back to Warfarin (why should you ?) ask to be selftesting. It is much easier and that way you can have control of your INR.

I must have Fragmin if I go under 3.0 in INR. I can understand you reclotted at 2.8. My therapeutic level of INR is now 3.2 - 3.8.

Please let us hear how it goes!

Kerstin

[Ozchick]

What sort of blood test is used for detecting range on Rivaroxaban? I take 20mg daily + aspirin but was told there was no test. (INR for warfarin and APPT for Clexane.) Last night ended up in Hospital as I had really bad chest pain going through to back after a short flight home and it felt so similar to PE's. I had CTPA and fortunately no clots and ticker was OK too but pain is still there dammit!

[AngelinaN in reply to Ozchick]

Anti xa - whatever that is. And maximum & minimum plasma concentration.

found a lot of info on the www - and took screen shots but cant upload photo data for you.

all I googled was - blood testing for rivaroxaban anticoagulation - and found all the info

you should still be in hospital being monitored. Can you contact your APS consultant. This disease is too dangerous to sit there and suffer..def not the time to be quiet..

Angie

[Lure2 in reply to Ozchick]

I agree with Angie!

Sometimes our mini-embolies and clots are not visible as "normal" peoples clots are because we have APS and very thick blood.

Take care and see a Doctor if the pain does not go away.

Kerstin

[Lure2 in reply to Ozchick]

Sorry I wrote an answer and adressed it to Angie. it was meant for you of course! See below please.

Kerstin

[Ozchick]

Thanks both of you for replies. It is still painful but not quite as bad as the last 2 days. If it's still there tomorrow (Monday) I will get in touch with haematologist and query it. Naturally all this stuff happens on a weekend when Specialists are generally not available!

I've had a quick check on the net and because of the half life (short) of Rivaroxiban the tests can still be variable unless there is a graph in place to measure against. (I will check whether the labs here do it) Factor 10a will be variable depending on when the last dose was. I generally take mine (20mg) at night and Aspirin in the morning.

[AngelinaN in reply to Ozchick]

I specifically have to split my 30mg am & pm - and my asprin (only recent) also am.

I have to have my blods done 4hrs after taking otherwise the result is difficult to interpret.

at 4hrs its a peak

I totally agree with you about problems always arise at weekends...!!!

The out of hours GP's throw the phone round like a hot potato the minute I mention DVT recovery and APS

you just have to be your own medical expert...I certainly no myself through experience what can wait till Monday and what can't - and if anything floats around in limbo I decide based on the options offered....if it was admission to Warrington hospital with weekend locum staff for example.....I would prefer to climb everest.

read as much as you can, do not worry about what you read as it won't all be relevant to your own particular scenario - and most of all, start listening hard to your own body - it wont fail you once you take heed of what its telling you.

take care - and be sensible always.

Angie

[Ozchick]

I will definitely seek Haematologist tomorrow and see what he says. I must admit that I thought 20mg was the optimum daily dose-I went straight to that dose coming from 80mg twice daily of Clexane. I will see whether the dose should be increased. According to the US page it is only given 15mg x 2daily for 21 days then changed to once daily 20 mg. Have you recently changed over or have you been on this dose for longer than 21 days?

xareltohcp.com/about-xarelt... is the link I've been reading. SAme on UK site but haven't found anything specific (yet!) for Australia.

[MaryF Administrator]

Thanks for your upbeat post, please keep us in the loop as to how you are doing and what the outcome is for your well researched case!!! MaryF

[disloyalorder]

I was on rivaroxaban (Xarelto) for a year and did not get on with it at all. I'm not a medical expert, but I've been put on apixaban (Eliquis) for about 6 months now and although it's one extra pill a day my blood test results have been a lot more stable. Not sure if it might be a less drastic solution to your problem rather than going back to the hassle of warfarin?