GWS ColinJ.. DVT/Pulmonary Embolism

[ColinJ]

I consider myself fortunate as I was out for the count both times I had one inserted, I found the removal uncomfortable though, especially the last one where there was a lot of catheter inserted, I had something called Low Flow Priapsim, if you look that up its adult material and an unpleasant subject, and it was a painful and very uncomfortable experience.

I will take your word for it, Dave - I too want to sleep tonight!

 

[Deleted member 1258]

It raised uncomfortable questions about the law interfering in people's private lives. The behaviour that the men in question got up to would have been pretty offensive to many people, but they were all consenting adults. A tricky one, made more controversial by the fact that the men were gay and it was suggested that the law might have turned a blind eye to heterosexuals indulging in similar behaviour.

I don't remember operation spanner, my view has always been what consenting adults get up to in private is between them and nobodies business but theirs.

 

[ColinJ]

I don't remember operation spanner, my view has always been what consenting adults get up to in private is between them and nobodies business but theirs.

Generally, that's my view too, but how far do you extend it? This case involved actual bodily harm.

The infamous Armin Meiwes case was about as bad as it is possible to be, but the 'victim' volunteered. (I won't put a link up, and don't search for information about it if you are of a nervous disposition! )

 

[Deleted member 1258]

Generally, that's my view too, but how far do you extend it? This case involved actual bodily harm.

The infamous Armin Meiwes case was about as bad as it is possible to be, but the 'victim' volunteered. (I won't put a link up, and don't search for information about it if you are of a nervous disposition! )

Thats a good question, there's likely to be a point somewhere where perhaps someone goes to far and someone has to step in, I'm sure there are times when people get in over their heads, a lot of these people use code words to say stop, what happens if the code word is ignored? The question is should the police step in or should it be left to the people themselves to police it.

 

[mrandmrspoves]

I'm trying to find out what the effects of exercise are on INR (the clotting speed which Warfarin affects). I'm hoping that it increases INR, which would mean that I could take lower doses of Warfarin if I exercised more regularly. If so, that would motivate me to do more - I would rather be fit and on a low dose, than unfit and on a high dose.

(I'm going to do more exercise anyway, when my body will take it, but I want to feel optimistic about the future. I want to be on the lowest safe dose of drugs that I can get away with. I'll find out soon enough what happens because I will be having regular INR tests and I'll track for myself INR vs dose vs exercise.)

As the effect of Warfarin is to slow down the speed that your blood clots until it is within the desired INR range advised for you, the dose is not really important in terms of safety as long as the dose you receive is keeping you within that range. As you know, too little Warfarin means you don't receive the fullest protection from developing a further clot, whereas too much Warfarin increases the risk of you having a haemmorhage or significant bleeding. I don't think it matters whether your required dose is 3mg or 7mg in terms of safety - so long as the dose is right to achieve the desired INR.
Certainly exercise (within moderation and as medically advised) should increase your cardiovascular status and help reduce your risk of blood clots - but I am not sure if it alters the bio availability of Warfarin. (Do let us know if you find different as I certainly am not an anticoagulant specialist!)

 

[ColinJ]

As the effect of Warfarin is to slow down the speed that your blood clots until it is within the desired INR range advised for you, the dose is not really important in terms of safety as long as the dose you receive is keeping you within that range. As you know, too little Warfarin means you don't receive the fullest protection from developing a further clot, whereas too much Warfarin increases the risk of you having a haemmorhage or significant bleeding. I don't think it matters whether your required dose is 3mg or 7mg in terms of safety - so long as the dose is right to achieve the desired INR.
Certainly exercise (within moderation and as medically advised) should increase your cardiovascular status and help reduce your risk of blood clots - but I am not sure if it alters the bio availability of Warfarin. (Do let us know if you find different as I certainly am not an anticoagulant specialist!)

Obviously, it is important to stay in the therapeutic range of INR, but the thing that bothers me is that I didn't feel well when I was on Warfarin last time so I want to be taking the smallest dose that I need to be safe, rather than the maximum I can get away with.

A lot of doctors say that physical fatigue and mental 'fog' are not recognised side-effects of Warfarin, but there are thousands of people online talking about suffering those side-effects and I certainly did. It was like having the beginnings of a cold and a mild hangover all the time!

 

[mrandmrspoves]

Obviously, it is important to stay in the therapeutic range of INR, but the thing that bothers me is that I didn't feel well when I was on Warfarin last time so I want to be taking the smallest dose that I need to be safe, rather than the maximum I can get away with.

A lot of doctors say that physical fatigue and mental 'fog' are not recognised side-effects of Warfarin, but there are thousands of people online talking about suffering those side-effects and I certainly did. It was like having the beginnings of a cold and a mild hangover all the time!

I must admit Colin, that I have never seen any patient who has complained of feeling bad on Warfarin. I have seen a few rashes and a few people who developed drug interactions. I hope it goes well this time.

 

[ColinJ]

I must admit Colin, that I have never seen any patient who has complained of feeling bad on Warfarin. I have seen a few rashes and a few people who developed drug interactions. I hope it goes well this time.

I have also read that long-term Warfarin use can significantly increase the risk of osteoporosis in men and (ironically) the reduced risk of blood clots in the veins can be replaced by an increased risk of calcification of the arteries - oh, super!

I'm going to start taking a vitamin B supplement. Several sources have suggested that a lack of B vits can cause some of the headaches and fatigue problems that I was complaining about. I don't eat meat, and only a small amount of fish so it is possible that I am low on B12.

I got a letter from my consultant today. He has obviously been brought up to date with events and wants to see me in early August. More tests will be done then to try and work out what is causing this problem.

I'm going to go along with what the doctors suggest for now, but will want a review in 6-12 months time.

 

[mrandmrspoves]

I don't blame you for reading up as much as you can Colin, but often the internet can be a great source of misinformation -or at least distorted information. I think there is a correlation between long term Warfarin use and osteoporosis in men though! What I often say to people who are worrying about the potential and well known side effects of taking long term steroids applies to your situation too, and that is, yes there are risks in the long term if you continue to take this......but there's a much greater risk that you won't be here in the long term if you don't take it.....
Here's to your long term - hopefully free from side effects.

 

[ColinJ]

I don't blame you for reading up as much as you can Colin, but often the internet can be a great source of misinformation -or at least distorted information. I think there is a correlation between long term Warfarin use and osteoporosis in men though! What I often say to people who are worrying about the potential and well known side effects of taking long term steroids applies to your situation too, and that is, yes there are risks in the long term if you continue to take this......but there's a much greater risk that you won't be here in the long term if you don't take it.....
Here's to your long term - hopefully free from side effects.

I know what you mean about misinformation so I am not taking individual blog posts and the like too seriously, but I have been reading proper academic research papers which should be a lot more reliable. Even some of those appear to generate as many questions as they answer though.

There was one paper that I was interested in which supported the idea of low dose Warfarin therapy after the initial treatment phase was completed, but I found criticism of its methodology later. I still think that might be worth exploring though - taking a slightly increased risk of clotting to reduce the bleeding, osteoporosis, arterial calcification and other risks. Basically, instead of coming off Warfarin after (say) 6-12 months, or staying on a full dose forever, it would mean taking a maintenance dose for life. It was suggested to use a target INR of 1.5-2.0 rather than 2.0-3.0. That might involve only having to take (say) 1-2 mg of Warfarin a day rather than the 6 or 7 mg that I normally take and I would be a lot happier with that. A lower INR target would greatly reduce the need for frequent INR testing too.

One doctor described the clotting-bleeding continuum as being like a seesaw. With the clotting end on the ground, you would probably never suffer from internal bleeding, but you might clot to death. With the bleeding end on the ground, you wouldn't have any clotting problems, but the slightest injury could cause a fatal bleed. The object of the exercise is to get the seesaw level!

I am pretty sure I have DVTs in one or both calf muscles. I have a slight pain in my left calf which is identical to the pain I got before my hospital admission last year, and the right one isn't 100% either. TBH, given that I have PE back and a high D-dimer result, it would be slightly surprising if I didn't have clots in my legs too. I don't think they ever quite recovered from the original clotting. I was really shocked that I was not routinely scanned again when I was taken off Warfarin in March. The doctors just seem to assume that everything is okay unless clotting occurs again. I also specifically asked if it might be worth staying on Warfarin for an extra 6 months to give the original clots more time to clear, but was told that it wouldn't help ...

The calf is a bit uncomfortable when I first start to walk about and then it settles down. It seem to be fine when I am spinning away on my gym bike against a very light resistance.

Anyway, I am making a list of questions and suggestions to present to the consultant in August. He might think that I'm a nuisance, but he is paid a lot of money so he can listen to me go on a bit a few times a year AFAIAC!

 

[mrandmrspoves]

Indeed ask away when you see the consultant......but I think given your history of recurrent clotting you are likely to be at your safest with an INR of 2-3.
Therapeutic range is decided on the basis of the risk of clotting compared with the risk of bleeding. You clearly have a high risk of clotting. It may be different if for example they had identified and treated a cause of increased clotting such as atrial fibrillation - but in your case ( from what I remember reading, that's not the case)

 

[ColinJ]

Indeed ask away when you see the consultant......but I think given your history of recurrent clotting you are likely to be at your safest with an INR of 2-3.
Therapeutic range is decided on the basis of the risk of clotting compared with the risk of bleeding. You clearly have a high risk of clotting. It may be different if for example they had identified and treated a cause of increased clotting such as atrial fibrillation - but in your case ( from what I remember reading, that's not the case)

They are still looking for an explanation. I made sure that the hospital took a sample for a thrombophilia screen before starting me on anticoagulants, and the consultant's letter asked me to provide a urine sample in August so they will obviously be doing other tests too.

I tended to be down at 2.1-2.2 most of the time I was on Warfarin before and I felt happier being at the lower end of the range than at the higher end.

What I haven't found out so far is who worked out the therapeutic ranges for different conditions. Somebody must surely have done proper studies to compare the relative dangers of clotting and bleeding at different INRs but I haven't found them yet.

 

[mrandmrspoves]

The relative correlation is difficult to determine because it is multi factorial and has to be based on the risk factors of the individual.
If someone has a very high risk of clotting it may be acceptable to reduce this risk by increasing the INR to as much as 5 (So it takes their blood 5 x as long as the average person's blood would take to clot)
In most people the risk is balanced best if the INR is in the 2-3 range as this significantly reduces the risk of them forming a blood clot with only a small increase in the risk of uncontrolled bleeding. I seem to recall that appx 2% of patients on long term Warfarin suffer symptoms of bleeding - but the % who would have developed a blood clot if not Warfarinised would be much higher.
The guidelines for prescribing Warfarin give target INR's based on the identified cause of the increased risk of clotting and the esttimated risk that that specific condition presents.
Once the patient has been established on a therapeutic dose of Warfarin - further clotting events demonstrate that the individual's risk of clotting has not been adequately controlled and therefore the target INR will be increased.
Sorry if you knew all that already.....but at least someone else may find it useful!

 

[ColinJ]

In most people the risk is balanced best if the INR is in the 2-3 range as this significantly reduces the risk of them forming a blood clot with only a small increase in the risk of uncontrolled bleeding. I seem to recall that appx 2% of patients on long term Warfarin suffer symptoms of bleeding - but the % who would have developed a blood clot if not Warfarinised would be much higher.

2% overall wouldn't be too bad a risk, but it is actually more like 2% per patient-year and the risk never goes away. In fact, I read that the bleeding risk increases with age. I am now 57 and most of my family live well into their 80s so potentially I'd be looking at that 2% risk 30-plus times, with the risk actually getting worse as I got older so I stand a pretty good chance of having at least one major bleeding problem in that time. Mind you, not all bleeds would be catastrophic and PE certainly can be!

I noticed some bruising where I had my Clexane jabs, and also where my INR blood sample was taken. That doesn't really surprise me. Last night, I thumped the top of my metal teabag-tin to shut the lid and in the morning I had a bruise on the inside of my index finger. I've also noticed that I have to be more careful when brushing my teeth. I don't find these things worrying, but they are signs that my blood is 'thinner' than it normally is.

I know that the therapeutic INR range for people with artificial heart valves is set higher, 2.5-3.5, I think. I seemed to do pretty well last time in the low 2s. I would be interested to know what my INR is normally. It strikes me that if I am naturally clotty, then it would be less than 1.0, say 0.5?

TBH, I don't quite understand why certain obvious tests are not done. I imagine it comes down to time and money in the end, but the cost of people getting ill again must be higher than the cost of the tests, not to mention the fact that some of those people get very ill or die!

 

[Inspector Clouseau]

GWS Colin, all the best