Giving up warfarin after post baby dvt - anybody had any further problems? Getting scared...

[zipzap]

Just wondering really...

I had a dvt after ds2 was born, have been taking warfarin for about 9 months although only 6 of those I have been at my target INR as I seemed to get used to a dose of warfarin for a couple of months and then my INR would drop and drop and my GPs were never very good at getting it back up, it would take at least a month each time .

Have heard different things about how long it is a good idea to take warfarin for in this situation, but 3-6 months is what was mooted and I have finally had 3 months at target INR.

So about to stop taking warfarin, went to doc for appt to discuss but didn't for long as also had bad conjunctivitis and needed second set of antibiotics for nasty lurgy that is doing the rounds and that I am struggling to get rid of having had it for 5 weeks +.

She said fine to stop so I did but I got really bad pains in leg just like I did when I had the dvt (unfortunately then I didn't have any of the usual redness or heat or big swelling associated with dvt). have also had lots of time in bed as a result of the lurgy and feeling very poorly, or sitting (can't see because of the conjunctivitis), and not doing as much exercise as I would like - combination of not being able to breathe properly from lurgy or see properly...

I know, I am a wreck!

So I just started taking warfarin again - I paniced about having clot - and not able to contact doc or get to surgery, thought it best to do something so took a dose of warfarin and continued to.

hopefully will be able to see doc tomorrow, just wondering if I will be told off for being silly or if I should be expecting pains or i should just get over it.

don't get me wrong, I don't enjoy being on warfarin and it's side effects (anybody else put on lots of weight, been very tired?) and know I must stop it if I want to ttc again, but just worrying about getting another clot and also about having pains in my leg (and bizarre feeling like having a pingpong ball in my groin - is it possible to get a clot there - nothing obvious to feel!)

just wondering how anybody else coped - with coming off and with dealing with 'getting another clot anxiety'.

hope that makes sense! and thanks for getting this far...

OK:

Firstly, you should never take Warfarin without medical supervision, whatever the reason - it is a dangerous and powerful drug.

Ping-pong ball could be a small hernia. Unlikely to be a clot if no pain or redness.

Make an urgent appt to see your GP. Don't self medicate.

thanks lou

I have got a GP appt, first one they would give me is tomorrow.

I just missed a couple of days of warfarin, just realised that I didn't say that it was for such a short time. It was less time than I missed than when I was unable to take it when poorly recently.

I've been for my INR test today - which was going to be the last one to check that my INR was back to normal, so at least that is still being monitored.

I just panic about strange pains/feelings having had no pain or redness for first dvt, just a strange feeling... would be nice if they would rescan you before you stop taking warfarin to make sure you don't have any clot left - seems a bit left to chance at the moment with the assumption that if you have been taking warfarin for x weeks/months that it will all be ok - especially as every doctor has a different idea as to what time you should be on warfarin for!

thanks again.

Hi zipzap, that extra info does make a difference, lol.

I'm sure you have been told, but signs to look out for are:

-Pain, swelling, redness, heat on that leg, or coldness of your foot/leg in comparison to the other one.

thanks again lou

that's the problem with writing posts when sleep deprived and tired - posts are far too long and waffly and then you forget to put in the critical facts [v v tired emoticon]...

interesting to see the symptoms - had been told all of them apart from the last one.

The coldness would come from the lack of blood flow because the clot blocks it.

Have they discovered if there was any underlying reason for the DVR apart from the birth?

Clotting can be made more likely if you suffer from a condition called antiphospholipid syndrome (or Hughes Syndrome as it is also known).

My DH suffered from pulmonary embolisms a few years ago (they were the result of an undiagnosed dvt in his leg breaking up and travelling to his lungs). The hospital he was treated at insisted there was no underlying cause and took him off the warfarin after 6 months, but the pains in his legs returned soon afterwards.

I insisted on him being referred to a more specialist haematologist and he was found to be suffering from Hughes' Syndrome and is now on warfarin for life.

It is a much underdiagnosed condition (even in hospitals) but can be tested for by a simple blood test. Many GPs do not even consider it; ask yours if you have been tested before you stop taking the warfarin again. Look on the Hughes Syndrome website for further information.

DVT even!

Thanks TW.

Nope, whenever I have tried to ask about 'why me' I just get that it is an occasional complication of pregnancy/birth - but still nothing about why me and not somebody else.

I have been googling it, and the other day realised that I had never googled 'post partum warfarin' (as opposed to post natal etc) and discovered an interesting paper that compared people taking warfarin as a result of pregnancy and those taking on a medical ward. Apparently seems that there might be something different coagulation-wise going on as it takes a much higher dose of warfarin to get to the right INR and a significantly higher dose to maintain it. THey reckoned that lots of women taking warfarin post partum are under dosed, especially if they get somewhere (like I did) that follow a dosing chart that is always expecting your INR to shoot higher and to want to minimise the dose even to keep below the target values.

I have had problems all the way through with my INR dropping too low, wish I had had this bit of research to stick on my file and not to have to keep taking warfarin.

But I will investigate hughes syndrome and see if I can get a test, especially if it is easy (not that I want to take warfarin forever!). It all just seems so haphazard, not checking that a clot has gone even if you get pains again.

I did speak to the doc and she agreed that as I had been poorly and in bed a lot and not very mobile (why they think I got it originally) that maybe it wasn't the best time to be giving up and to carry on for a couple of weeks until I was up and about again.

Have you been checked for Factor V Leiden thrombophilia as well? 5% of the population have it (that's 1 in 20) so pretty common.

When i stopped taking warfarin after having DS (about 2m after), I started getting crampy feelings in my calves as well but no swelling, heat, redness etc. so didn't stress too much about it.

But if you are worried, ever, go to A&E (if out of hours) - there is a very simple blood test they can do (if it is on their list of tests) that will indicate very quickly whether or not you have a clot. Then your mind will be set at ease - better to do this than to have an undiagnosed DVT, which has the potential to become a PE.