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Aspirin to help PSD


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I have been diagnosed with PSD (a count of 22). I suffered my first thrombosis in the lower leg after being immobilised for a foot pain caused by running long distances regularly. My specialist/consultant was confident that I should be placed on Warfarin for life, however after some research he approached a consultant haematologist. It has now been decided that I should take 100mg of Aspirin per day to help the condition, and statins to take the peaks off the cholesterol levels I have. I was pleased and at the same time a little concerned about the possibility of a further event. (If I have a further event I will be placed onto Warfarin for life). Has anyone been given this option rather than warfarin as a start and what was your experience? Is it a normal course of events, to go this way and wait for a second thrombosis before the start of anticoags?

Anyone else in New Zealand with PSD, I would love to hear from you.

Any comments would be gratefully recieved.

Alan

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Hi Alan

I too have had a DVT and have been diagnosed with PSD. This all happened back in 2001/2002. Since the end of 2002 I have not been on any anticoagulants.

When my haematologist first suggested I stop taking the warfarin I was a little worried and actually went to a different hospital for a second opinion. The second Dr, said the same as the first really! There is a risk associated with having PSD and not being on any anticoagulants but also there is a risk of being on long term warfarin. The haematologist told me it was about 50/50 and the choice was mine.

I chose not to take warfarin as I suffered with a few side effects when I was on it. Plus, if I was on warfarin I would have to be careful all the time not to cut/injure myself and that limits activities that you can safely partake in such as skiing!! Also I was 21 at the time and couldn't face the prospect of the rest of my life like that!!

I was told that if I had another DVT then it would mean warfarin for life.

I have had no further clots whilst not on warfarin (touch wood!). I do try to make sure I keep hydrated by drinking lots of water and avoid long periods of immobility.

I was advised that I may need anticoagulants at certain risk times during my life such as long haul flights, pregnancy and long rest periods ie after operations etc.

This summer I flew to New York (from the UK) and was given heparin injections to cover me for the flights, my GP was unsure whether I actually needed them or not but it gave me much better piece of mind!

Anyway, I've rambled on for quite a bit there, hope I've answered some of your queries :(

Angela

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Hi Alan,

I too am on 100mg aspirin daily with PSD. It has less side effects and therefore less restrictions on my life. I have heparin injections in the same situations that Angela mentioned also. I think it's probably the best way to prevent clots as long as you remember to keep well hydrated and don't get too cold. Keep reading through this site and you'll learn heaps of useful info. It's pretty alarming at first and then you learn to get on with life, it does give you a new appreciation for life though, I must say. :(

Cheers, Kathy.

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Angela and Kathy,

Thanks for the messages, they give me the sense that I am not at all unique (just rare like the rest of us!!). I have also been advised to go back to the Drs when we fly to the UK for a holiday, and to stay aware of any cramps/pains that wont go away after 24 hours. Also the swelling/heat blotches and shortness of breath symptoms. The consultant suggested that should I start any symptoms then I should firstly have a D-Dimer test to check for clotting activity, and to rule out any other causes. Since it appears that I am fortunate enough not (at this time) to have suffered a further clot and have avoided the necessity for life long warfarin, awareness and listening to my body is the best way forward. I am currently training for a half and a full marathon, and will run it in a shirt with some wording to raise awareness over here of this potental silent killer.

Alan

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A few years ago I asked the CEO of a new airline to consider offering d-dimer tests to frequent flyers, as a kind of perk and something to do between changing flights. Its a good quick test for the presence of clotting factors but unfortunately it also tests positive for some types of cancer. Therefore doctors don't offer it as a quick test because they need to ensure that counselling is also provided in case the test is positive and its not thrombosis.

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I have taken aspirin a good part of my life, and the only time I stopped taking it regularly was after they found out I had a bleeding disorder. I then had a stroke episode, and I self medicated with aspirin, which always helps within 20 mins, back to normal after about 2 hours. Aspirin has always been a life safer for me. One doctor told me that it was just fine to take aspirin if you thought something was happening, i.e. a clot or stroke,etc. It can't hurt you basically. :) For cramping in the legs caused by clots, I usually take a combination of aspirin and paracet. Works wonders. I always have a bottle of the stuff handy, just in case I feel like I will die. :(

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Good luck with the marathons Alan. What a great idea to advertise PSD, I shall do the same next year when I will hopefully compete in the Avon Descent. I believe that being fit keeps clotting to a minimum as I had a lot less problems when fit than not. Could be completely misguided, but I feel better if I think there's something I can do to help myself if you know what I mean.

Kathy.

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  • 2 weeks later...

Hi All,

Thanks to all of you who took the time to post a comment. Kathy, I also believe that fit is probably better all round, however for those who are not overly sporty (or mad enough to be) any sort of mobility and exercise will keep the blood flow up. Go on you for going for the Avon Decent. As for my running I am now past the 1hour long run (I lost so much fitness after the clot). It is getting easier again and the excess weight is starting to fall off, breathing is better and I feel good. Still intending to run a half and a full marathon this year, dont care about time, just care about doing it and raising PSD profile. Life is worth living, and and worth living well...

Alan

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