Stopping warfarin

[Peanut]

I've heard recently of some people with a diagnosis of APLS being told to stop the warfarin they are on, by their consultants, including one at St Ts. This seems to apply to those who have not had a 'major' clotting incident. Can anyone shed any light in the reasons behind this?

[Manofmendip]

No but it sounds like a dangerous thing to do. The people concerned may not of had any major cloting incidents because they are on warfarin, so stopping it may mean that they now do get such an incident.

Dave

[stillwaiting]

My INR was high (5.4) on Monday so I was told to stop the warfarin for one day. Yesterday was awful - tingliness, right sided weakness and my face has dropped on one side. Chest pain today - am off to the Drs in a bit. I had spoken to my link nurse yesterday but nothing was done. I am appalled at how little seems to be done/known by our doctors about APS and I am furious that today I will have to fight my corner yet again when really I just want a quiet lie down!

Thanks for letting us know about this.

If stopping warfarin for a day does this to me, I would be horrified if I was taken off it altogether.

Lynn.x.

[Manofmendip in reply to stillwaiting]

I'm glad that when i was on Warfarin (I'm now on Fragmin) I used self test and self manage my INR. I would have just reduced my dose if my INR was 5.4 and gradually brought it back in range. I only stopped taking it for a day when my INR was 6.5, then it dropped to 3.3 by the next day.

Dave x

[stillwaiting in reply to Manofmendip]

Hi Dave - I have kind of decided (hope I am brave enough to be assertive - lol) that I will never take the advice to cut out a days warfarin med again - it is like I have gone back to square one - I just hope I haven't had another TIA.

Lynn

[Manofmendip in reply to stillwaiting]

I hope you haven't had another TIA too. Warfarin is a blunt tool and sudden changes in dose should be avoided, as should sudden changes in diet and alcohol consumption; consistancy in everything is the key to stable INR, I found.

Dave x

[tim47 in reply to stillwaiting]

Of all the patients rights that we are supposed to have, the one I enforce most is to reject any and all suggestions that come from time to time for various reasons, to stop my warfarin. I will listen to someone who may want to reduce it for some specific reason, but bring fragmin into the argument. I quote my old prof, formerly Regius professor of medicine who said "before you come of Warfarin Tim I'd better be put on lifetime diazepam"

[Sophia]

It happened to me. My consultant at Tommy's asked me how I felt about stopping warfarin despite repeatedly testing positive on Lupus Anticoagulant. I was shocked and told him/her firmly that it was warfarin that has saved my life and had made me feel human again so I wasn't going to quit taking it no matter what. After asking the consultant the reason for saying that, the answer was that I hadn't had a clotting incident (which I had 8 months later with an INR of 3.5!!!) and warfarin is recommended only to those patients who have had DVTs etc. only that but the consultant went on to say that if he/she were Prof. Hughes (who was the one who diagnosed me) he/she would never have given me the diagnosis of APS. I was so frustrated and angry! To be fair though, the consultant apologised afterwards in an email thanking me for reminding him/her what Prof. Hughes had always been teaching them to "think outside the box". Sometimes the consultants do need a reminder themselves because they tend to forget important things...I do like my consultant, he is understanding and helpful but that doesn't mean he is not human and doesn't make mistakes. So, I'd say we are the ones who know what is best for us and shouldn't just go along with what our consultants say but engage in constructive conversation for all our sake. Keep smiling everybody! Xxx

[Peanut]

Thanks to all who have replied.

It's a big worry, isn't it? I haven't had a DVT or a CVA, but have had mesenteric stenosis(?sp), as well as cerebral problems with speech, thought process and limb jerking, all of which have been helped considerably with warfarin and all of which return when my INR is too low. I am no longer under St Ts as I have moved away, but the consultant I now see hasn't mentioned any changes, but its so disconcerting having the goalposts changed without reasonable explanation.

[Manofmendip in reply to Peanut]

Hi Peanut

Where are you from and who do you now see?

Dave

[Peanut in reply to Manofmendip]

I'm in Suffolk and see a consultant in Norwich.

[Manofmendip in reply to Peanut]

Hi Peanut

MaryF on here is also in Suffolk, send her a PM and see if you two can meet up.

It might be worth you seeing Prof Hughes, privately, at the London Lupus Centre, if that is financially possible for you.

Best wishes.

Dave

[Peanut in reply to Manofmendip]

Hi Dave

I was diagnosed at the London Lupus Centre about 8 years ago, by Dr D'Cruz and met the Prof there too. I have SLE and APLS and have done very well on the warf, considering.

Dr D has a paper that I am trying to read on line about 'Controversies in APLS' and wether its ever safe to stop warfarin. Is it ok to post a link here? Perhaps someone with more medical understanding than mine can make sense of it!

[Manofmendip in reply to Peanut]

Hi Peanut.

Time for you to get back and see Dr. D or Prof, I think, and get a letter from them about how they feel your condition should be managed.

Best wishes.

Dave

[MaryF Administrator in reply to Manofmendip]

Hi There, Dr R Watts at Ipswich Hospital has worked closely with Professor Hughes over the years and is a good person to consult with, and regarding the various gripes about St Thomas, I often get messages about this, and we see this on here, I am glad the word apology is mentioned at times, as there have been so many instances of patients being wrongly having medication removed only to have another incident, there is no excuse, and many who are seronegative DO have the disease and have a history of clots and other obvious markers behind them. Mary F x

[Hidden]

I think this is the reaction to so many people bleeding on warfarin, that doctors are now being told by NICE that people only with provable clots should go on such a powerful blood thinner.

People will have to be looked at as individual cases - if you have had a series of TIAs, you will probably be able to persuade your doctor to let you take warfarin. However, if your doctor can't find any evidence of clots, then they will be reluctant to want to put their patient in danger of a bleed (and sadly, there are many which are sometimes fatal).

It would be ideal if there was a contract you could choose to sign, saying that it is YOUR choice to go on warfarin, but I don't think the NHS works quite like that yet ... but it might be worth a try!

[tim47 in reply to Hidden]

This just feels like we are going backwards, especially with some at St T's challenging what took so long to achieve. I have managed to avoid the worst outcomes of Hughes for 40 or thereabouts years on warfarin and the dodgiest moments were when my target was below 3 and I still managed to have three TIAs in a day when my INR was 3.3.

[SuzanneJ]

I am worried after reading your posts about stopping Warfarin. I had a PE in 2006 with several blood clots on both lungs and a large blood clot on my left lung. I was immediately put on Warfarin and given Heparin injections and to the best of my knowledge I haven't had any further clots since. I'm now afraid I will have my Warfarin stopped as I haven't had any for years now and so I will have more if I'm not on Warfarin to thin my blood.

When I asked someone about this recently they reassured me by saying: "They are only not prescribing warfarin for people who have never had a thrombosis ie. people with just memory problems etc. Anyone, like yourself, who has had a clot will stay on warfarin."

Hope this reassures others like myself who worry about anything and everything when it comes to having Hughes Syndrome. I was discharged from St Thomas's Hospital back to my local Hospital but prefer to scrape the money together (I don't have medical insurance) to see Prof Hughes twice a year. It's well worth the money for expert advice and peace of mind. He's wonderful.

Suzanne

[Peanut]

Thank you for all your comments on this subject.

Things have altered considerably since I posted this, as a couple of weeks ago my 19 year old son, who was working in America, had a heart attack, followed by a huge DVT which went from his knee to his navel. To cut a long story short, he has had a positive LA test and it is likely he has APLS. We are hoping to get a referral to St Ts for a definitive diagnosis and to get an idea of how he will go on from here. He is on warf and also heparin injections until in therapeutic range.

Just let anyone suggest that he stops the anticoagulants!!