Compression stockings & pe recovery

I just wondered how many people wear compression stockings after having a pe? & also any advice on medication ? Having tried rivoxaban I'm not sure where to go next ? Still feel I have a ticking time bomb inside me!

Thanks Emma x

[sueys]

I had a PE 21 years ago & everything was fine until 4 months ago when I got told I had a DVT ( was a real shock). I've to wear a stocking for the next 2 years & now be on blood thinners for life ( I'm 45 now) . I was in Rivoxaban until about 3 weeks ago swapping to Apaxiban but the downside of this is I have to remember to take it twice a day ( & my memory isn't the best). My only concern is that it's not thinning my blood enough now - I had bad pains in my leg at the weekend & after taking advice from 111 went to A & E, was scanned on Monday and told there were no new clots. It's worrying not knowing what's going on in your body when you get bad pains and sensations. I just hope I'm now on the right dosage, I've to go back to the Drs in 2 weeks and see what they say.

[Hidden in reply to sueys]

I'm so sorry it's so frightening isn't it? Good that you spotted a dvt , I don't know where my pe has come from this is the second time for me, I've had leg pain I thought it was a side affect of the rivoxaban so on clexene at the moment , I have compression stockings but as I'm not sure where the pe came from not sure I should wear them, the blood flow isn't great in my legs so maybe I should , hope your ok

Emma x

[sueys in reply to Hidden]

Hi Emma , 1 PE is bad enough but to have had 2, you poor thing. Have you seen a blood consultant ? I've seen a Dr twice and It was her that said I needed to wear the stocking for 2 years and be on medication for life. I've been discharged now and have been told to go to the Drs if need be. Have you been tested to see if you're prone to them, I have been but mine came up negative, so I didn't expect to get another. I hadn't realised if you've had a DVT then it leaves damage in your veins, so it's a lot easier for another clot to form, I wish someone had mentioned this the 1st time round. I was on Clexane 14 years ago, whilst having IVF tonne on the same side, I don't recall having any side effects from it. I do find it scary at times when you don't know what's going on inside your body.

I know why I got my clot, I tried getting fitter and my knee suffered - I had to rest as was struggling walking, resting with my feet up caused the clot, so frustrating, as I was a lot more active before July than I am now !! I was told 21 years ago it was down to just starting the pill and having my leg put in plaster to keep my knee cap in place).

If they have given you a stocking then I think it would probably be best wearing it, I can't see it will do any harm.

Take care & I hope you can get some answers soon Sue x

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[Hidden in reply to sueys]

Hi sue.

My first pe was nearly 3 years ago & they said it was because I'd just had my son so it was provoked , 3 months of clexene then that was it , this time in sept another pe 3 clots in my lungs , unproked , they have tested me for cancer & it seems I now need an MRI on my liver, they did do some blood tests still waiting for results , not sure what drug to go on next think they want to try apixiban but I worry it's not strong enough too , hope your feeling a little better today ?

Emma x

[sueys in reply to Hidden]

Oh dear, must be even harder for you not to worry with having a young son. It's bad enough when I don't feel great and mine are 14 next month.

Glad they've done some tests, hopefully your MRI appointment will come through quickly & it will show what's going on & a likely cause of it. When I had my PE I was on wharfrin for 6 months .

I'm back at the Dr's in a couple of weeks and will let them know my concerns about is the dosage of Apaxiban strong enough to protect me. It's just so hard to know what to do for the best & make sure you're fully protected so nothing else happens, especially when you're young and have a family.

I'm feeling better thank you, it's just very frustrating at times, I also suffer with Lupus ( they say brought on from having children) so it always takes longer to recover from things anyway - hey ho, it could be worse.

Try not to worry and enjoy the forthcoming Christmas period with your son & family - they grow up so quickly. Sue x