Scleroderma & Raynaud's UK (SRUK)

Has anyone had a blood clot?

I've had mixed connective tissue disease and Raynaud's since I was a teenager. Four years ago I ended up with a subclavian vein thrombosis (a clot near my collarbone). When I was in hospital with the clot everyone I spoke to said it didn't make sense and didn't understand why I had got the clot. Almost every doctor I have spoken to since has told me it must be because of my mixed connective tissue disease and no doctor was prepared to take me off warfarin to do any blood tests, to quote one doc 'if you get another blood clot it could be fatal so we'll keep you on warfarin for life'.

I was referred to a doctor at the Royal Infirmary in Edinburgh a couple of years ago and she eventually agreed to take me off warfarin so I stopped it 4 weeks ago and had a blood test on Wednesday, I'm due to see a different doc in another 4 weeks to get the results. I have been slightly nervous over the past 4 weeks as I'm concerned I could get another clot though my pharmacists have been really supportive and have given me more advice than the doctors I've seen recently.

Has anyone else had a blood clot? If so, do you know what caused the clot?

5 Replies

They think I had a blood cot on my lung about 5 years ago, I say think because after they put me in hospital and gave me the warfin injections for 4 days they finally got around to running the scan to see if there was a clot. And there wasn't but they were not sure if it was due to the warfin breaking it up or that I never had one in the first place. It was all incredibly annoying at the time! And I never heard what they thought may have caused it.


yes i have had numerous dvts pes ect i started gettin blood clots many years before i was diegnosed with sclero and have since found out it is part of the sclero i was takin warfrin but it didnot agree with me i now take fragmin injections twice daily if u want any more help ect feel free to email me and good luck


about 15 years ago i had a clot or so it was thought to be but never proven spent night in hospital and next day i was ok but since then my health went down hill discovered i had also erythromelalgia etc


Thanks for your comments. I saw a specialist in Edinburgh and they didn't find any reason for the clot I had. They have taken me off warfarin (so happy!) and told me I should be fine although there are certain times in my life when I will need to use fragmin injections. I was slightly scared of coming off warfarin but am good now.

I have erythromelalgia too, along with raynauds - I haven't found anything to treat them so having to deal with both which makes things challenging at times!

I hope you're all doing well and not suffering with the cold too much. :-)


Hi I know what u r going through I have had 4 blood clots in the last 6 years I'm 27 years old I have got a dvt in the right leg I like you have been messed around by doctors/hospitals I'm on and off warfarin every 6 months they still don't know why I keep getting them I hope they get to the bottom of it for you good luck


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