Unprovoked DVT

[MoonBassAlpha]

Had this (left leg) back in March, was on Apixaban for 3 months, then resumed my squash training and had a leg injury which I thought may have been a recurrence (turned out not to be, and the existing clot was about a quarter of the size, so reducing nicely).

As a precaution, I was back on Apixaban for another 3 months, then to be tested again after 6 weeks off it (tomorrow).

It will be interesting to find out if I do actually have sticky blood. Whilst I don't really relish being on Apixaban for life, preventing PE or stroke would be well worthwhile.

Would sticky blood be consistent with NEVER having been able to run more than about 3 miles maximum? (I love racquet sports, especially squash, but don't relish getting in to long rallies!) Also having a tendency to cold extremities?

Finally, are there any questions I should be asking at my appointment? It's at the Oxford Churchill Thrombosis department, so they should be very clued up.

Thanks

Jules (MoonBassAlpha)

[MaryF Administrator]

If you do have Hughes Syndrome/APS and have had a clotting incident you will need to stay on something. Do write a list of points to bring up at the appointment, also do test your Thyroid, D, B12 and Iron also. Also other family members past and present, (miscarriages, heart attacks or strokes at an early age, other autoimmune diseases including thyroid etc).

Hughes Syndrome/APS has a habit of causing severe fatigue with some people, some do best taking Plaquenil - Zentiva brand alongside their other medication.

Be aware that if you have passed some of the three tests previously for Hughes Syndrome/APS, but then have temporary negative test results, it does not meant the disease has gone away.

MaryF

[Lure2]

If you think you may have HS/APS you should ask your Doctor to test for:

Anticardiolipin antibodies (aCL),

Lupus Anticoagulant (LA),

Anti-beta2-glycoprotein-1 (anti-B2GP1).

They (all three) should be taken at a lab, best at a hospital as they are time senible. Be taken twice with 12 weeks between the tests.

Good Luck

Kerstin in Stockholm

[GinaD]

After my eventual diagnosis I talked with my hematologist about which sports activity I should keep and which I should ditch. He agreed that hiking was OK; and no, I should not continue with my wish to learn to ski; and road or easy trail biking was good but mountain biking was a a big "NO." The doctor was most concerned about the danger of falls.

I bill myself as "part polar bear" and have never had much of a problem with cold weather.

Extremities in cold weather? I follow cold weather hiking protocols with double layer gloves and boots. And usually have no problems -- As long as those gloves are lined and nice and warm. If I'm going to be hiking far into the wilderness on a very cold day I will put 2 of those small, chemical heat pack thingees in my boots.

[Lure2 in reply to GinaD]

Hi Gina,

I guess when you walk into the wilderness you are not alone?

What is the difference of hike and walk?

Kerstin

[GinaD in reply to Lure2]

The usual distinction between a hike and a walk is based on whether one is on a paved sidewalk or a road,or walking through the woods or another mostly uninhabited area. And no, I do not hike alone anymore – although I used to. I promised my family when I turned 60 to always have others with me when I hike. Of course there are some very local short hikes in the woods ( within a mile of my house) that I have arbitrarily exempted from that provision. I am also a member of the Kanawha Trail Club and we hike once or twice a week.

[Lure2 in reply to GinaD]

I guess your condition is rather good! I also take walks outside Stockholm (where I live) for at least half an hour every day. When i see stairs I take them and not the elevator. We say here that there is nothing that is so dangerous as sitting still.

But I live on the 7th floor so at home I usually take the elevator.

Have a nice weekend!

Kerstin

[Ray46 in reply to GinaD]

When I started warfarin I was asked what sports activities I did, I listed cycling skiing horse-riding and surfing (nothing else I do or did has much head injury risk). The reply was a grimace followed by a "well, we're not going to force you to give them up", so I didn't. I do sometimes wish I'd said rugby karate and judo, and given my occupation as tree surgeon...

I do now wear a helmet for skiing and cycling (and I do cycle on-road, always did, and I would agree off-road is higher risk) but I have no illusions that the protection reduces the risk to anywhere near what it was before. But there is risk in everything, you still have to live. I've had people suggest I should stop skiing until I'm "off warfarin" - and what, ski again when I'm dead?

[MoonBassAlpha]

Well, just back from the clinic with good news, d-dimmer test is back in normal range, and went through the meaning of the results of my previous tests, and am reassured that I DON'T have APs. That's a great start to the weekend!

Thanks for the support and useful information on here , I certainly know where to come should any issues crop up in the future.

Wishing you all the best of health in the future.

Jules

[baba in reply to MoonBassAlpha]

What caused your DVT then?

[MoonBassAlpha in reply to baba]

It's not quite clear. The symptoms appeared after a particularly tough squash match on a hot humid court, followed by a vigorous foam rollering massage, followed by a hot curry, so I might have been somewhat dehydrated!

My first thought was that I'd torn a muscle deep in my calf.

[Lure2]

Hi again,

Glad the DVT was ok but are you quite sure that you have done the 3 tests for HS/APS twice within 12 weeks and they were negative the first time.

Remember some people here are sero-negative from time to time. We must never stop anticoagulation if we have this illness! Even if the bloodtests are negative the illness is still there.

So, please be sure you do the right thing as this is a tricky illness when you stop anticoagulation!

Best wishes from Stockholm

Kerstin

[MoonBassAlpha in reply to Lure2]

Thanks Kerstin

I've had 3 lots of tests March to September, and I asked the consultant directly, and it was an emphatic no. I've a good idea what to watch out for now, so will be right back at them if anything recurs.

Cheers

Jules

[Lure2 in reply to MoonBassAlpha]

Hi again,

Good if that means that you do not have APS.

So the 3 tests were negative TWICE then with 12 weeks between the tests- You have heard no doubt here that some of us have sero-negative answers on the 3 antibodies for some time and they come back positive later on all the same. This illness never go away and therefor it is so important that you never stop anticoagulation when you have started.

It is important to follow up especially if you have had symptoms and also a family-history of strokes or autoimmun illnesses as this illness sometimes can run i families.

I think you should ask for a copy of the answers of the 3 bloodtests done. It is good to have because later on if you start Warfarin you can not take Lupus Anticoagulant again.

Keep well!

Kerstin in Stockholm