A Bit in the dark

[Nino699]

Hi

This is my first post so I'll give you all some background on myself . I am 29 I'm fit a non drinker and a non smoker I been in the armed forces since school .

Last year I was diagnosed with blood clots 23 of them to be precise in my lungs . My word how frighting when this happened lack of breath pain on another level to what I have experienced before.

Now last week I have been diagnosed with lupus anti coag and I have been told next to nothing other than your going back onto warferin.

As many I'm trying to do some homework but I'd rather here from people who maybe are experiencing this condition and how it affects them .

I open to any thoughts and suggestions from anyone on this I will add I'm in the united kingdom.

Thank you so much for your time reading this and look forward to hearing from you all

Nino

[daisyd]

Hi if I were you I would look at the sticky blood site on here as well you will find loads of information on it. Warfarin a life saver for me

[tracey13 in reply to daisyd]

I have a blood clotting abnormality I've had 3 dvts in my right leg. I tried warfarin but my inr wouldn't sabilise so I'm now on rivoxaban which doesn't need monitoring. I only need to have a liver function test twice a year.

[daisyd in reply to tracey13]

Hi Tracey what was your INR range when you were on Warfarin my INR has to be around 3.5 and some other people with Hughes syndrome /Antiphospholipid syndrome / Sticky blood are on Clexane injection as rivoxaban isnt recommended for people who have to have high INR yet as it is a fairly new drug

[tracey13 in reply to daisyd]

My inr was ranging ng from 8.5 down to 4.2 it managed to go to 3.0 but the next readings were shooting up. After 4 months I decided to try rivoxaban I've had no problems on this tablet x

[Nino699 in reply to tracey13]

I had riveroxban when it first happened but I kept clotting on it so they moved me to warferin. If been told there is another medication you can take trying go do some research into it.

Asking my GP for information I may as well talk to a brick wall see s like a unknown thing to them .

[SoulRebel-APS in reply to Nino699]

I have APS and take warfarin and plavix. Generally APS patients are not candidates for the newer blood thinners. But im good with that as I don't like the idea of not having a saftey net, regular inr testing as with the new meds u don't test sobu just dont know what ur blood is doing. Warfarin can sound scary but its been used for many many years we know the side effects and the cautions. I would not trade it for a new medication I like knowing there is a long history and tons of studies on warfarin its effects and possible side effects. Newer meds have had few studies and are not generally a safe alternative to Warfarin. At least not for me. I have long history of over 100 strokes of all types plus a PE that was untreated but my body closed of about 2/3 rds of my right lung to keep it from killing me. Im sticking with the warfarin, not that I have any other option. I have an unstable inr that requires closer monitoring and constant changing of dosage but it keeps me alive and mostly functional.

[Momonez]

I am so sorry to hear about your problems. You are way to young for this. I got a blood clot from a midline the hospital put in my left arm. Your problem sounds much more serious. I did not like the warfarin so I took myself off of it. I was only on it for about a week. If I were you I would listen to your doctor. If you have any questions regarding your doctors abilities, find another one. Good luck to you.

[moo196]

HI

sorry, don't have experience of this in particular ( I had/have blood clot on the brain since Oct 2014 ) and warfarin is the drug for me - tried and tested - and the newer drugs may well not need monitoring ( i'd rather be monitored personally than left to it) but they don't have antidotes either as far as I know so if one were to be in an accident then you can't get vitamin K injection for clotting.

I wonder if there is a Lupus section of this website for you ??

Good luck

K

[AnneTS]

The Hughes Syndrome website is very good and there is a very helpful forum for aps patients. If you have to maintain a higher INR then the Noacs are not suitable as those of us who do have clotting problems might need the versatility of taking heparin at certain times (before and after surgery etc). I am non lupus so I can self-test my Warfarin which has made life so much easier for me.