Pulmonary embolism' after the dx

HI I had a Pe 15 mths ago was on Warfarin then tried Xarelto for a while didnt suit me back on warfarin I found Xarelto. Made me itchy  leg pain and weight gain It does get better the first 12 mths are hard as your body gets used to the medication Good luck 

Hi, I was diagnosed in January, lucky for me I was abroad so it was discovered quickly.  However it was months before I was referred to a consultant in UK, that was a scary period as I only had the knowledge that I was to take pills for 6months but no support, constant calls to my surgery and I felt a real nuisance, hence I found this site.

I had a painful back/side for weeks... In fact recently I am getting them again   

Severe dizziness was a symptom of the pills, I changed meds and now mild dizziness, I take a bottle of water everywhere and drink a lot... It helps.

Some people get other side effects to the meds, nose bleeds appears common.

Previously I never felt weary during the day but now it is like a blanket being thrown over me but I just work through it.

my consultant said exercise is good. Never really say if there are any limits My foreign consultant was adamant that I must avoid falling over (gawd how often do we fall but I started walking like a space woman avoiding every crack) and to avoid banging my head!!.. because of the meds.

Now almost 4 months on to my family/ friends I am normal, mentally I do have lots of wobbles. 

I would say if you have severe side effects go to dr. Mentally you will start to relax, I felt better being at work but part-time... my concentration is definitely effected and I am shattered, I relax but try to keep my day normal and not take a nap, I don't want that habit to form.

good luck not that you need it you are diagnosed so on the mend. 

Beth

 

I'm 18 months post PE and only this week have felt like I am finally regaining my energy and my breathlessness is beginning to improve. I am also doing pulmonary rehabilitation which has made a huge difference. A year after the PE I was so scared and depressed that I went back to the consultant and my GP and got the referral for rehab. It wasn't until I got there that the nurse finally explained the physiology of breathlessness. The muscles around our lungs, the intercostal muscles become out of shape during all the rest as do the quadriceps in the thighs, which require a lot of oxygen. So even though the clots have dissolved we are still breathless because of muscle weakness. I've been on Xarelto for 18 months and am now on it for life. I don't have any side effects at all.

Hi and welcome,

Mine was about 8 months ago and recovery has been steady. I did get chest pains and still do to a lesser degree. I was told these were likely from scarring and would reduce over time. They have.

I agree wholeheartedly with Lazeedaze about always carrying water.....if I am out for any amount of time, I always take loads of it. I drink a lot at home too.

I do get headaches, but that may be nothing to do with the PE or its meds. No way of telling really.

I had two points where my recovery took a jump forwards - once around 3 months in and again around 7 months in. 

I was originally on Xarelto, but didn't get on with it (fearsome joint pain and some bleeding). Now on warfarin, which is better, but fiddly to regulate.

PE seems to take its toll psychologically, both before and after the PE (in fact I think severe anxiety is one of the symptoms of PE).

In the words of Douglas Adams - "don't panic", BUT, if you are concerned about anything, go to A&E.  Was the hospital that told me that...good people.

Lastly - if you get in front of a specialist, ask lots of questions. Better still, make a list and take it with you. 

All the best Peter