I'd like a bit of guidance / reassurance

[Vera53]

I spend my winters in Spain. I developed a groin DVT for no apparent reason in December. I was admitted for 3 days, discharged on Clexane injections, referred to a haematologist who then added Sintrom. At first my INR was measured 3 times a week, now it's down to fortnightly, my range is 2-3 but it has only once been 2, it's usually about 1.8. In Spain, they definitely don't approve of self testing / self managing, but because of our lifestyle (we meander slowly through Europe on our way to and from Southern Spain, spending about 2 months a year doing this, and in the UK in summer we spend many a happy week touring with our caravan) I have already decided that this is the only sensible option and purchased a monitor.

I have recently returned to the UK for a family celebration and decided to visit my GP to bring him up to speed on my condition and treatment and have been very disillusioned. I was carefully noting how my INR readings are going, how that is being managed in terms of adjustment of my medication. I have also read a couple of research papers on Warfarin compared with Sintrom, on Pubmed, and it would seem that, although they are different drugs, they work in a similar way, and both require regular INR testing.

Sintrom is not prescribed in the UK and my doctor advised that I should 'stay in the UK, change to Warfarin, and it would be a considerable while before they would be confident to support me in self monitoring'.

Well, I am happy to be responsible for my own monitoring, it doesn't exactly look like rocket science.

So, does anybody have any experience of Sintrom? And am I being naive? Is INR testing / coagulation monitoring more difficult than it appears to be to me, as a novice?

[Hidden]

hi Vera53.

No, you are quite correct that self monitoring is simple and not rocket science and it sounds like you have it under control. self managing is more difficult but brings better clinical results usually so my advice is to persist with it. I have done so for 15 years or more and it has allowed me to travel. I last set out from home in the UK almost 6 weeks ago and am writing this from Southern Australia.

I have never come across Sintrom and only have experience with Warfarin but if it is in fact a similar Vitamin K antagonist I assume that the principles are the same. I would ensure that you get good clinical support for whatever you decide however and not simply on other patients like myself.

All the best.

Peter

[wild_cat]

Have you been told about Rivaroxaban? It doesn't need INR tests its 2 pills a day for the first 2? Weeks then to one a day so you can get on with your life without worry. Hope this helps let me know how you get on

[Helenatemurci]

Try rivaroxaban this is a new drug and you don't need to check it works like the clexan injections and have less side afectstake care

[Vera53]

Thanks so much for your helpful replies. I don't imagine I would be considered for the newer drugs as, at the moment, my anti coagulation therapy is relatively short term, only till July. I have read that the downside to these newer drugs is that there is no ready antidote. Does that not worry you if you have an accident or a bleed for some reason? My INR was only 1.3 Wednesday (target range 2 - 3) so I have a way to go to get it stable and within range. I eat a lot of green veg, green salad etc as a norm and was determined to keep on my normal diet and get my INR stabilised with that as the norm, as I follow a low carb diet excluding green veg and green salad would leave me with very few options. my GP was unwilling to prescribe test strips, so I can't really afford to experiment in the short term to see which foods have the most significant effects. Are Brussels Sprouts particularly bad? I've been having quite a lot of those in the last few days (one of my favourites and they are sometimes not that easy to find in Spain). We depart for our return journey to Spain tomorrow.

[IanredUK]

The answer to diet is that you eat (and drink) the same type of food each day. You can have as much green vegetables as you like but this needs to be constant. I was advised by my cardiac surgeon that if I wanted to drink 8 pints of beer a day then that was OK (although he certainly wasn't recommending that) but it needed to be constant i.e. you shouldn't abstain from Vitamin K or alcohol during the week then binge at the weekend.

I have self tested and to some extent self medicated for a number of years which has meant that I have been able to continue travelling extensively for business and pleasure.

My biggest issue is that when at home I do tend to eat a much healthier diet with lots of green veg but it is much more difficult to get vegetables in hotels etc.

I used to get test strips on prescription but this stopped when the CCG took over so I am having to purchase these myself. But I am willing to spend what is less than £100 a year for the ability to self test and the piece of mind that brings.

[Vera53]

Thanks, lanred. Yes, I've made the same decision, I've ordered one pack of strips that, at one a week that would last me through to June. I just wondered if anybody else had experience with 'greens'. On a daily basis I eat cabbage, kale, Brussels Sprouts, broccoli, Swiss Chard, cauliflower, spinach - it is the main 'vegetable' part of my diet. If I had limitless amounts of test strips I could be tempted to weigh and record everything and see if patterns emerge - but I don't and I can't.

It's all a learning curve. Thanks for the input.