a little advice please. I have r/a and back in Nov 20 had a blood clot was given a 3month course of blood thinners(apixieban) just coming to the end of it now and my ankle started to swell and the pain was like when I had my blood clot, so had another scan and confirmed that the original clot was still there but have also developed two new clots as you can imagine the doctor was concerned and changed my medication to an injection form they also took bloods to check if I have sticky blood syndrome does any one else have this with R/A and how do you deal with the injections each day etc. My Partner is stressed by the news and I am trying to brush it off but if someone could advise on effective calming this malarkey down /possibly living with this syndrome would be massively appreciated. Thank you
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pat66
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Oh Pat what a lot to deal with, alas I know nothing about this at all, let’s hope some of the others here know something for some guidance... Are they going to treat the clots you mentioned?
I hope so, would greatly appreciate all advice, apixieban was 5ml tabs and this injection is 80 so think they are trying the hard stuff but not a fan of needles. Thanks for replying
Oh bless you Pat, keep us posted how you go, I don’t think any of us like needles or these meds we all have to take, but it’s better than the alternative, sitting watching the world go by, all the best for now my lovely 🧚♀️
There is something called lupus anticoagulant positive which is related to blood clotting. It is not related to SLE type of lupus. You get a blood test called ATTP for clotting and if it is is outside normal parameters more than once they start a more specialised screening. I have RA and have started down the route of these tests. Have not had clots though. My GP thinks it is related to RA. You could start looking into it. I know it is not exactly what you asked but could possibly be related.
Hello Pat. I’ve not heard of sticky blood syndrome but I’m on Apixaban like you. I had pulmonary embolisms diagnosed last September and have been on the drug ever since. Last week I had another CT scan to see if they have gone and await the results. I have no idea why I got the PEs in the first place as I did not have a DVT first. But the ankle swelling you had has made me wonder as I have had that too. I will ask about that and whether it could have been the original cause. I hope your problem gets sorted soon.
It’s also known as Hughes Syndrome (after Dr Graham Hughes who discovered it) and Antiphospholipid Syndrome. My mum had it (she didn’t have RA) and suffered within all her life. Once on treatment (usually warfarin or other blood thinners) she lived a pretty normal life. Before she was diagnosed (which only happened due to my researching it and requesting her GP to do the tests) she had suffered numerous blood clots on her lungs and was terribly unwell. But once she was treated she didn’t have any further clots. Clemmie
Hi, I but my partner is more worried about it than me as she is a googler and read some bad things so your reply is perfect thanks so much also was the medication she took via tablets sorry if its personal or a silly question but I am not a fan of this injection. Thank you for replying
Most people take anticoagulants via tablets and you then have blood tests regularly to check your clotting levels. My mum took warfarin for many years. For a while she was having daily injections but that didn’t last long and I’m sure that tablets are still the preferred way to deal with it.
There are alot of people on the Lupus UK site who have Hughes Syndrome and may be able to offer some help. As a charity, Lupus UK has alot of info on stick blood etc.
Lupus UK has a really friendly Healthunlocked forum. Lots of us are on both NRAS and LUK sites.
About 12 or so years ago I was told that I had Hughes Syndrome which I was told meant I had sticky blood and I was put on blood thinners. Soon after going on them which were in tablet form I began to get quite a few bruises which were unexplained.
About a year later I was moved to a different rheumatologist who did more blood tests and said I didn't have sticky blood at all and took me off the tablets and nothing has ever been mentioned about it since then.
Yes I have sticky blood and am on warfarin since 2015. Had no clots but mine is cerebral. Also called Antiphospilipid syndrome .APS for short or Hughes syndrome after professor Hughes who discovered it.There is a separate healthunlocked site you can get help and info from.It’s called Hughes Syndrome - APS support
Thank you for your reply, may I ask if you still get the clots and is the warfrin only in injection form twice a day. Sorry to bombard you with questions about it but really don't want to Google anymore as seen stuff that freeked me out and I would prefer to hear it from people. I hope that makes sense.
My husband has had quite a few clots in his legs. He was diagnosed with Factor 5 or Leiden’s disease. A genetic test was needed to diagnose. It’s really not too uncommon. He took a daily anticoagulant for years, but now he only does before a trip. He does use compression socks. As his partner, it is a bit scary. We know that if he has any type of head injury, just a little bump, we will go to the ER for care. Any pain in his legs are watched carefully, and if there is heat at the site he goes in for an ultrasound.
I’m sharing this with you because perhaps you might investigate this further. It does run in families, but we had no idea of this in his ancestors,
Thanks for replying, I am due to go back for my blood results around the middle of February and will definitely ask as I had never heard of this before and its sounds the same with the heat in the legs etc. Understand exactly what you mean regarding the partner too it's both of you that go through it. It's like we both have it not just me lol, take care of each other.
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