Blood clot—update

[MusicalFurbaby]

Hi everyone, hope you’re all travelling OK. I posted a few weeks ago about a blood clot found in my hand. Just wanted to let you all know that the conservative treatment prescribed by my doctors has worked. I had a follow-up ultrasound this week, and the clot is gone! Hallelujah!

No one has been able to work out what triggered the clot. Lupus and APS are obvious culprits. But I also recall that 2 days prior to the clot pain starting, I had a cortisone injection (double dose) in the shoulder of that same arm. All of my health professionals have assured me that an injection in the shoulder cannot cause a clot in the hand. I understand this—a clot would usually occur at the site of the injection, not elsewhere. It just seems like a bit of a coincidence though?

Has anyone else had experiences like this? If you have had clots, have they always had a clear antecedent, or are they just random? Thanking you all! 🌻🌈

[sewalongwithme]

Hello there. I have never had a clot following an injection, but I have had a PE. I have SLE and a diagnosis of APS plus other things. I am on blood thinners for life. I believe that it is tricky to get diagnosed. I went to a conference in London in 2019 which was led by professor Graham Hughes. It was about the big three. Lupus, APS and SchrogrensSyndrome (can’t remember the spelling). He was looking into the connection and the fact that many have all three. My clot came at a time when lupus wasn’t being managed well and it wasn’t a good time. I was extremely unwell to the point I was scarlet with my skin badly affected too. I would get them to look at APS and run the tests which often don’t do what you need them to show. All the best 😊

[MusicalFurbaby in reply to sewalongwithme]

Thanks sewalong, I do have APS and lupus, but not Sjrogen’s thankfully. Perhaps I can just put all this down to a flare. The doc is reluctant to put me on blood thinners at this stage, as they strip your stomach lining, and I have already had gastric ulcers this year! Thanks for sharing your experience, and I’m glad things seem to be better for you now.

[sewalongwithme in reply to MusicalFurbaby]

I understand. My mother was in that position (she had a lupus diagnosis) so with every tablet they give me I get preventative eg meds to protect my stomach. I was told that the only way to minimise clots with APS was to have treatment which has its own nasty potentials, but you need to do as you are advise for you. All the best

[MusicalFurbaby in reply to sewalongwithme]

Thank you! Yes, I’ve been taking those stomach-protecting meds for the past couple of weeks while on the intensive course of anti-inflammatories for the clot. Meds to counter the effects of the meds! I’m having a review with the doc this week so we’ll see what they say. Thanks again.

[Millie74]

Hi,

I had a PE in December 2020, having had no clotting issues previously. I have SLE and was told by my consultant that because of my PE and the increased risk of clots that those with SLE have, I would need to take blood thinners for life. I don’t take any medication to counter the effects of the blood thinner and haven’t had any problems whilst taking it. Every situation is different and many things can cause clots to form, but I think in my case there was a definite SLE correlation.

[MusicalFurbaby in reply to Millie74]

Hi Millie, thanks for sharing your experience, I appreciate it. Yes, I agree, I think I can chalk this clot up to SLE and APS, and just call it a flare. Glad to hear about your positive experience with thinners; having had multiple stomach ulcers this year, I am still quite worried about acquiring more through those meds! But I’m seeing the doc tomorrow so I’ll see what they think.

[Millie74 in reply to MusicalFurbaby]

Yes of course, every situation is different and SLE and APS are so complex. I hope your appointment goes well tomorrow. Take care.