GWS ColinJ.. DVT/Pulmonary Embolism

[ColinJ]

Yeah, I don't like the needles either! I can put up with them, but I'd rather do without.

I haven't changed my diet, but I would like to be free to eat what I want, when I want, if I want!

My local anticoagulation clinic gradually increase the interval between INR tests out to about 12 weeks (if INR seems stable) and that will make me nervous. Other things can affect INR, such as the amount of exercise, alcohol intake (I haven't drunk any booze since I got ill last year, but I'd like to be able to drink a few pints a couple of times a week), other illness etc. and I wouldn't want my INR to be way out for a long time before they pick up on it. That's why I intend to buy an INR meter and self-test if I decide to stay on Warfarin at the review next year.

So far, I haven't had any bleeding or joint problems but the spells of intense fatigue accompanied by mild nausea are very unpleasant. I am assuming that the Warfarin is to blame because I felt better within a week of stopping taking it in March.

I think that I may have clotted a couple of times before but got away with it. I looked back through a couple of old diaries and found examples of what I had called 'snotless colds'! I'd suffered fatigue and breathlessness, but didn't get bunged up. That sounds familiar!

My mum had problems with varicose veins, and a couple of clotting episodes, so it is possible that I have a genetic problem. The NHS seems to keep losing my test results, so I haven't found out if they have found out whether that is true!

My sister told me recently that our mum spent some time on Warfarin when I was young; I hadn't known that.

I remember my parents warning me that I shouldn't sit for hours in the cross-legged position that I used to adopt as a child, but they never really explained why not. I can now see what they were worried about ...

 

[woohoo]

......... but one of the nurses did mention that once the warfarin had settled down, I'd probably get switched to one of the newer anticoag drugs, ......

possibly/probably Dabigatran (Pradaxa). It works in a different manner to Warfarin and there are a few essential preconditions that must be met before it can be prescribed but it has several advantages e.g. reduced probability of bleeding compared to Warfarin, no blood tests required (other than to establish your suitability), no diet issues, less interaction with other drugs. However, there is no current antidote for Dabigatran. With Warfarin, Vitamin K can be administered in emergency if you have a major bleeding incident and clotting is necessary for survival. That isn't the case with Dabigatran. Needless to say, if you look on the net, there is a degree on controversy surrounding this (lots of them American lawyers sites!). On the other hand, the half-life of Dabigatran in much less than that of Warfarin (one of the reason you have to take it twice daily) and it gets out of your system quickly. So, if you are offered Dabigatran (I don't know the NICE guidelines, which may be a consideration because it is more costly) then you have to balance the probabilities, life-style, convenience etc. before making the choice.

I was going to say "Hope this helps" but I suspect it just adds more things to think about - sorry.

Warning. I am not medically qualified but I am on Dabigatran! (for cardiac rather than DVT reasons).

 

[ColinJ]

Thanks woohoo. I decided that the best thing to do at the moment was just to get on with clot-busting and let the world's doctors gain another year of experience with the new drugs; I'll spend the next year reading about them!

I already had doubts about Warfarin, as described in my recent posts above, but discovering that it can cause osteoporosis and atherosclerosis*** really rang the alarm bells! It is used to work in the body against vitamin K, but vitamin K is increasingly being recognised as being important for bone and cardiovascular health.

*** The drug protects against clotting in veins, but increases the risk of clotting in arteries - hmm ...

When there wasn't really any other sensible choice, clot-sufferers would just have to take their chances with Warfarin, but it is only sensible now to consider the new drugs available. I know at least one of them is accepted by NICE because I was reading about it the other day. Although the drug costs a lot more than Warfarin, the saving on INR tests pretty much makes up the difference. I can't remember which of the new drugs it was because I get mixed up by the plethora of different generic and brand names.

Blimey - I just checked the NICE website and it was stated there that an estimated 2.4% of the population of England over the age of 18 need to be anticoagulants - that's nearly a million people!

 

[woohoo]

Thanks woohoo. I decided that the best thing to do at the moment was just to get on with clot-busting and let the world's doctors gain another year of experience with the new drugs; I'll spend the next year reading about them!I

... and hopefully I will still be around a year or so from now to add to this experience! I emphasise that I am taking Dabigatran, for a cardiac rather than DVT condition. AIUI, NICE approved its use for cardiac (specifically AF) conditions in Oct 2011 but that other countries have approved its use for DVT/PE (but not yet in the States although many sources see that as a matter of time / procedural issue).

Having read your posts, I know that you've done a lot of research in this area but I'll mention this link because it seems well balanced
http://www.drjohnm.org/2012/12/dabigatran-pradaxa-good-news-on-safety-but-caution-still-warranted/ and given that it is AF-related, you might not have seen it.

Although I have not been on Warfarin, my views on its downside match yours. However it is well established and may still be the only choice for many. It's an interesting call and in my case; I hope I've got it right!

 

[ColinJ]

There are some interesting posts on that blog!

I just checked - one of the other drugs I was reading about was Rivaroxaban (Xarelto) which NICE supports for DVT/PE. There a couple of other novel agents too.

 

[woohoo]

Agree about the blog comments. The probabilities, half-life considerations and real world stuff such as if you get serious intracranial bleeding your probably buggered either way is interesting.

I saw your dog tags review; I've got some as well. Hopefully if I ever have a major bleed any medics attending will read them, get me to a hospital PDQ and start pouring blood in!

 

[ColinJ]

Ah ... drugs companies are making rapid progress on antidotes for the new anticoagulants. That makes my strategy of 'a year or two on Warfarin, then reconsider' look sensible.

(The big worry is falling off my bike and banging my head while on a non-reversible anticoagulant. I wear a helmet, but that probably isn't going to protect enough against a hard knock.)

 

[bicyclos]

Hi Colin
I have been away from the forum a good number of weeks now may be longer with a number of commitments etc( no I havent been in prison!) and just signed in and came across this post what Potsy started which dropped my jaw a little. I haven't read through all 34 threads but read enough to come to the last post. goodness me Colin, you are giving us all the jitters.............I hope you are feeling better and hope you get some sort of resolve with your health. My thoughts are with you........

 

[MartinQ]

Thanks woohoo, Dabigatran could be the one. I've a follow up consultation (originally for the first set of PEs) in a couple of weeks so it will be good to discuss. However, I'm not sure if I want to have a decision about which drugs to take. If the "experts" can't tell me, why should I magically know which is best? Having said that, the last consultant I saw in hospital simply said you've been on warfarin for 6 months, time to stop. No discussion of recurrence risk factors (clots like boys more than girls, DVT next to groin ...) or the fact that everyone else had said I'd be a lifer because of the size/number of clots ... Felt like he wanted to make sure he had enough time for tea and biscuits before the next patient. Seeing a different consultant each time you go for an appointment is actually rubbish when there is a lot of subjectivity about when to stop, which drugs to take, ...
Colin, agree about coming off the bike. I never was particularly good at descending, but now I'm often slower going down than going up. Anxiety is supposed to be fairly prevalent after this sort of stuff. Never really had it myself, but I simply don't fancy a head cut which never stops bleeding at the best of times. Dog tags will be ordered this weekend.

 

[woohoo]

(The big worry is falling off my bike and banging my head while on a non-reversible anticoagulant. I wear a helmet, but that probably isn't going to protect enough against a hard knock.)

Agreed but in the Dabigatran and Warfarin cases, any damage that has been done will be more or less the same, whichever drug you are on, until you get to a hospital that has the facilities to address the lack of clotting (either Vitamin K, lots of blood or both!). The Dabigatran will be making its way out of your system faster than Warfarin up to that point (shorter half-life). The Warfarin antidote (the administration of which is not without complications) takes some time before it becomes effective. The number of hours that have elapsed between taking a Dabigatran dose and the point at which the Warfarin antidote becomes effective materially affects the relative clotting times in either's favour. If the accident happened shortly after the Dabigatran dose then (assuming that the brain is still OK), being on Warfarin is probably the better option. If it happens a couple of hours before a Dabigatran dose is due, then the Dabigatran is the better option.

All AIJUI, IMHO etc. of course!!

 

[ColinJ]

Hi Colin
I have been away from the forum a good number of weeks now may be longer with a number of commitments etc( no I havent been in prison!) and just signed in and came across this post what Potsy started which dropped my jaw a little. I haven't read through all 34 threads but read enough to come to the last post. goodness me Colin, you are giving us all the jitters.............I hope you are feeling better and hope you get some sort of resolve with your health. My thoughts are with you........

Thanks. It was a blow to get so close to being well, then slip back again. Still, 'What doesn't kill me, makes me ...', er, '... only half-dead', eh!

I was okay most of yesterday but then got weak and fuzzy-headed for over an hour in the evening. I have read hundreds of reports of other people on anticoagulants having similar problems, but so far I have not found any explanation or cure, other than to stop the meds (not a sensible option for me, now) or change to a different drug, which I might do in a year or so.

Colin, agree about coming off the bike. I never was particularly good at descending, but now I'm often slower going down than going up. Anxiety is supposed to be fairly prevalent after this sort of stuff. Never really had it myself, but I simply don't fancy a head cut which never stops bleeding at the best of times. Dog tags will be ordered this weekend.

I would be less bothered about (smallish) surface cuts because at least they can be dealt with fairly easily. Bleeding inside the skull is the nightmare scenario!

I am normally a pretty quick descender - I hit 65 kph (40 mph) the other evening, but that was on a safe, wide road. What I wasn't happy about was arriving at a 15% descent which had just been resurfaced and was covered in loose chippings. A couple of slides made me very nervous, so I think I will go a different way until the workmen have come back and cleared the excess chippings!

 

[woohoo]

....... I've a follow up consultation (originally for the first set of PEs) in a couple of weeks so it will be good to discuss. However, I'm not sure if I want to have a decision about which drugs to take. If the "experts" can't tell me, why should I magically know which is best?

I disagree on this point. If you bone up on the alternatives then it is much easier to a straight conversation with the consultant that balances the various aspects of the drugs with other factors such as your preferred life-style. It is an inexact science and you are often in a better position to judge the "softer" aspects than the consultants. I don't know if Dabigatran is an option for you (it is for me because of my cardiac AF) but to illustrate the point, the NICE guidelines for Dabigatran state

The decision about whether to start treatment with dabigatran etexilate should be made after an informed discussion between the clinician and the person about the risks and benefits of dabigatran etexilate compared with warfarin.

PS When I spoke to the consultant before I was about to have a bypass, we were talking about how long the intensive care period normally lasts. He said to me that it was good to find out about these things because he had read a research paper that showed that those who did "bone up", tended to have a better outcome than those who didn't.

 

[ColinJ]

I was amazed to discover that many people prescribed Warfarin just stop taking it, without consulting their doctors!

Other people think that the drug actually dissolves clots, so they can safely carry on doing whatever bad things led to clotting in the first place. My sister knows a couple of obese couch potatoes who continue to drink and smoke heavily, eat lots of junk food, and avoid exercise. They think that just popping a couple of Warfarin pills a night has sorted out their problems ...

The number of hours that have elapsed between taking a Dabigatran dose and the point at which the Warfarin antidote becomes effective materially affects the relative clotting times in either's favour. If the accident happened shortly after the Dabigatran dose then (assuming that the brain is still OK), being on Warfarin is probably the better option. If it happens a couple of hours before a Dabigatran dose is due, then the Dabigatran is the better option.

All AIJUI, IMHO etc. of course!!

I assume that the Dabigatran doses are taken at intervals of 12 hours? It struck me that you could select the times based on when you do most of your riding. A commuter could choose, say, 09:00 and 21:00, whereas it might be safer for me to opt for something like 06:00 and 18:00, given that most of my rides are in the early afternoon.

 

[woohoo]

I assume that the Dabigatran doses are taken at intervals of 12 hours? It struck me that you could select the times based on when you do most of your riding. A commuter could choose, say, 09:00 and 21:00, whereas it might be safer for me to opt for something like 06:00 and 18:00, given that most of my rides are in the early afternoon.

Yes 12 hours and I've adopted your logic It's 07:00 and 19:00 for me ... and, although not recommended because of the clotting risk, if you do miss a dose, you can take it as long as there are more than 6 hours before the next one is due and even if you do miss it completely, you can restart the normal regime without any of the blood test / INR stuff.

 

[MartinQ]

I was amazed to discover that many people prescribed Warfarin just stop taking it, without consulting their doctors!

I've been having hospital consultations (in the Elderly & Geriatric Dept, I'm only mid 40s) every couple of months or so, it was them that told me to stop and I'd agree about forewarned is for forearmed. I've never had a follow up with the GP (although don't particularly want to either as they were initially rubbish). Problem was the consultant unexpectedly told me to stop and wasn't listening to my garbled reply about his colleagues saying I was probably a lifer. Hadn't done any prior research about recurrence factors, ... drug alternatives as it simply wasn't on the cards.

Colin, you're a braver man than me doing that descent :-), although there isn't much opportunity on the Cheshire plains.

Having said that, I was pottering to the station on my bike this morning. Kids and cat had jumped into bed with us, had got a cup of tea in bed from the wife, weather was cool and nice. Even with all the clots/rat poison ... life isn't too bad.