Leg pain & rivoxaban

I wondered if anyone else had leg pain with rivoxaban ? Like a burning behind the knee can extend to whole leg sometime crampy , I had a scan in my right leg a week ago shows nothing & normal D dimer , the doctor said it might. E nerve pain I just don't need something else to worry about , thanks x

[jaxta51]

Hi Barbie13, not sure what others think (and no experience of Rivaroxaban) but I found I had a lot of leg pain after my DVT. In fact I still get cramps in that leg at night sometimes even 3 years on! The left ankle swells too. I asked my doc and he arranged a Doppler test just to be sure, all clear. Maybe after clotting there can be circulation issues or other kinds of stuff causing some pain but if you've had something like a DVT or PE you always think - o no, not again! My approach is: 1 - breathing exercises, get as calm as possible, 2 - have a cup of tea or glass of water (I've found I get dehydrated easily and that can cause cramp etc, now I have a glass of water with every meal and it helps), 3 - tell my hubby or someone sympathetic how I'm feeling (maybe post on here if no-one's available), 4 - go for a walk outside in the fresh air. After all that things tend to get back in perspective, but it's fine (and sensible) to get stuff checked with your doctor if you're still concerned. Sounds like you're doing all the right things and taking steps to reduce the anxiety, really hope things get better for you soon! X

[Hidden in reply to jaxta51]

Hello , thank you for your reply ,

In my anxious state i ended back in A&E just constantly worried like I'm stuck in that mind set , how are you ever meant to

Know if you have a new dvt if they tell you there's not always pain! Anyway it seems it's post thrombotic syndrome which would make sense so should of me stockings straight away when It happened, I just worry as they can never see the veins in my ankle as these are patent? I've just had the most awful burning pain, so measured for stockings tomorrow & counselling soon , need to try & get my life back it feels as though we have been living a nightmare,

Thank you for your response again really gave me a lift

Emma xx

[DCS12 in reply to Hidden]

Barbie13. I'm in the same situation. post thrombotic syndrome is really impacting me after multiple clots following a severe infection 3 years ago. I was on warfarin for 14 months. then wrongly told to stop, upon which dvts returned quickly. I'm now on rivaroxiban. I've had pts on both drugs, so don't think the drugs are relevant to pts. for me pts has all been due to swelling causing some pain which causes muscle tension causing more pain. this has meant my muscles get very tight in the bad leg, mainly in my calf. my experience is, firstly this is nothing to worry about. it's chronic pain and tension.its horrible but no more than pain and tension. Secondly my experience is to minimise the tension by massage and muscle manipulation, stretches and warmth. also preemptively reduce tension as best as you can, by regular self massage and exercises that work best for you, to reduce the tension and make the blood flow. for me I do a couple of minutes upside down cycling motions once or twice a day. some walking and cycling depending on how tight the muscles are. when things are good, i cycle 2-3 miles a couple of times a day. at the mo it's not, so I do a about half a mile every other day. I always elevate the leg when it is practical to do so, and always wear the stocking. My experience is the drugs have no impact on pain, but mean you don't have to be too concerned about things like more dvts. The rest is about pain avoidance and management, . the main thing is only you can really work out what works for you. wear the stocking and elevate the leg. do what you can to reduce tension in the muscles, that cause pain. Omce I can reduce the pain and tension a little , I will be able to do more exercise to push blood around the leg, to help it improve longer term, but it has to be balanced. If you don't do anything it may not improve. If you overdo it, it will cause tension and pain. try to push it a little but not too much. only you can work out what is the right balance. best wishes.

[Hidden in reply to DCS12]

It's just a constant worry for me, I got Cramp in the night then spent the night anixous 😞 I seem to have lots of burning in my legs both of them on & off & no pain killers work , & now muscle spasms , I will try some of the things you advise , I'm waiting for made to measure stockings at the moment praying they help , do have some under knee are the ok to use ?

Thanks for your response people on here have been so kind x

[Harvgal]

Hi barbi13,

I've had some dull aching in back of thigh recently ( otherwise unexplained ) - could be side effect of the Apixaban I'm taking. Seems to have resolved. ( only been in it since PE in sept so early days I guess ) Gale

[Hidden in reply to Harvgal]

Horrible isnt it?

How are you feeling now? I've got lots of leg pain on & off but my anxiety is awful I can a cramp in my leg last night & keep getting muscle twitches couldn't sleep then , hope your ok & startingyo feel better

Emma x

[Harvgal in reply to Hidden]

Hi Emma,

Mine (leg discomfort) is very mild to what you are feeling it seems.

I am nurse and significantly less stressed about the whole thing. Ill share my thoughts in the hope that it helps your thinking too! I was a bit shocked to be told I have had a 'life threatening' event but am not going to let it stop me from living a full and happy life. I have been fit and well up to now- not died of a PE and it seems that many, many people suffer similar events (blood clots of various sorts) and do very well after it so I am going to be one of those. It really isn't going to stop me doing anything I choose to do- with possibly some minor adaptations. It (having a DVT/PE) certainly does mess with your head for a bit and takes a period of adjustment but in my job I see people who die or are dying a slow horrible death from cancer, weight issues, heart issues, chronic debilitating pain so I feel blessed to have none of these (at present) so am going to maximise how good I feel now - not worry about the what ifs- or possibilities. I do feel that positivity and optimism have helped me thus far lead a fabulous life and I do feel very blessed. I work full time, exercise moderately, eat well which all helps I think! Hopefully in time and with some help (nothing at all wrong with that !- we all need it at times) you're anxiety will reduce and you can pick up life where you left off before all this. I wish you good luck.Gale

[Hidden in reply to Harvgal]

I'd love that mindset I really would , when this happened to me before I found it easier to get over , this time is a struggle & the leg pain has me in high alert constantly as I don't know why I have it , the medication has worked on my lungs so should be working all over , I'm going to try really hard i know your right it's just this awful fear , the hospital just phoned & want me to have a whole manner of tests guess that's a good thing, what a lovely outlook you have thank you again xxx

[janetythomas1950 in reply to Harvgal]

Dear Garvald. ..not sure if you're still on this forum but your post was very reassuring to me. My name is Janet and I've just suffered a saddle PE totally out of the blue 11 days ago, spent a week in hospital and am now on Rivaroxaban for life. They believe my PE came from severe thrombo-phlebitis 6 months ago. ..I have suffered several bouts over the last 38 years. My head is truly messed up and in my darkest hours my sensible head and non-sensible head argue with each other resulting in very little sleep. I am an energetic and reasonably healthy 66 year old with 3 gorgeous grandchildren to love and spend time with. I want to get on with my life and put this damn thing behind me but am currently stuck thinking about the clot sitting there like a saddle in the branch of my pulmonary artery....my thoughts ranging from...will it break up and move if I make any sudden movement, cough too hard, lift something slightly heavy and so on!! I spoke to my blood nurse a couple of days ago and she was very reassuring but then I think...we'll it's OK for her...it's me that's going through this...I know my thoughts are totally irrational but this has been a massive shock to know I have a life-threatening condition or does the fact that I'm now on Rivaroxaban mean I no longer have the life-threatening condition but that it's controlled! !! So many questions!! I could go round and round in circles but will stop there. I'm guessing you'll get the gist of my panic! Thanks for reading this. Janet.

[Dillan75]

Hello everyone who's concerned with all these blood thinners I was on Warfarin for 18 months but wasn't happy cos my upper stomach felt like it was golng to explode , my legs started to get little red spots from my ankles nearly up to my knees my skin changed its texture so went on Rivaroxdan then my chemist told me there was some uncertainty about the drug and should ask my doctor to put me on something else . I am now on Apixiaban which seems ok so far I have had all muscule problems since I have been on all these blood thinners I have always had a heart murmur and hypotension not much I can do about that I'm afraid it runs in the family Iwas a very fit person until they started to mess about with me now I'm told I have a hip problem and bursitis on my thigh I'm afraid I've given up now I only take 10 mg statins now instead of 20 ( havn't told my doctor) Have read so much about how statins are a killer, have been on this dose for about 4 months now with no effect, touch wood! As you can seeI havn't much faith in all these medicines Good Luck everyone!