Hello, everybody

Hi, all. My name is Annabel, and last week, to my utter shock, I was diagnosed with small blood clots on both lungs. I'd gone to the GP with a nasty pain in my ribs, and she thought it was nothing but nevertheless referred me to A&E just to rule out any possibility of a blood clot, so I was a bit gobsmacked to find there was more than one! (So, incidentally, was the GP when I spoke to her on the phone yesterday!).

Anyway, I'm now on Xarelto (rivaroxaban) for the next three months, and quite possibly longer, and am to see the specialist on the 18th. So far, so good, but it does seem to give me dreadful indigestion! GP has given me Omeprazole to help with that, but I did wonder whether anybody else has had similar problems?

[linkfield]

No such problem, but make sure you take your medication with food!

[Hidden in reply to linkfield]

Always. They stressed at the hospital that this was really important!

[nossib in reply to linkfield]

Is it only with xarelto, @linkfield, that you need to take with food? I'm on warfarin and don't take with food, have never been told to.

[Hidden in reply to nossib]

If you haven't been told to, it probably isn't an issue. It *is* with Xarelto, as it can cause internal bleeding if it doesn't have "something to work on", as the nurse said!

But swings and roundabouts - I don't have to avoid broccoli, or other foods high in Vitamin K, and I don't have to have monthly blood tests.....

[nossib in reply to Hidden]

Thank you, mrsredboots. Appreciate your reply.

[Motty]

Hija , I've been taking them since March , they give me a bit of indigestion too at times. Otherwise I've found them ok. I had a clot in my leg which went Into both my lungs too, totally out of the blue .

[Hidden in reply to Motty]

They seem fine apart from the indigestion! They think my clots may have been caused by a chest infection, rather than anything elsewhere.

[AndySD in reply to Hidden]

The link to a chest infection is very interesting. I was diagnosed with multiple PE in May, totally out of the blue. I had no previous indication of any problems except a chest infection in March. I have been worried and struggling to try to understand where the PE came from. Does anyone else have any thoughts on chest infections causing PE ?

[Tr1cky in reply to AndySD]

I had an unprovoked PE 2 years ago and underwent every test under the sun, which all turned out to be OK. The haematology consultant said the more likely cause for the PE was Pneumonia as no other reason was found. I was on rivaroxaban for 6 months and had no side effects, eating and drinking normally.

[ladyluck53 in reply to Hidden]

I would take some probiotics or extra yogurt if I were you. Sometimes these medications throw off your gut. Good luck.

[Hidden in reply to ladyluck53]

I've been taking Yakult - as I was on antibiotics, it's a good excuse! I love that stuff, but it's expensive so I only really buy it if one of us is on antibiotics.

[harryjames4]

How old are you?

[Hidden in reply to harryjames4]

Mid-60s. Why?

[Wittycjt in reply to harryjames4]

Yea, why?

[aharris1]

Hi there. I hope you are feeling a bit better. I too had a PE in January - unprovoked this time - I had one in 2011 after a C section. Blood has been tested and abdominal scan to rule out tumours - negative. Now on Xarelto for life. Was given medication for heartburn but it reacted so badly that I just manage my diet now and try and avoid fatty things. It comes and goes. I didn't know about the food thing. Funny enough though I was told I had low vitamin B12 and when I read up about it it does say that low B12 can cause clots - the link was never mentioned to me though. I have also just come back from a long haul flight and no problems so don't feel as though Xarelto will stop you doing what you want. 😀.

[Hidden in reply to aharris1]

Thanks. I am certainly not letting it stop me - for now, I'll be on it until mid-October, I think, and then they'll see. Haematologist says I'll have another scan then so they can see whether the clots have disappeared, and blood tests to see whether I have sticky blood or whatever it's called.

What is slowing me down is an almost total lack of energy - I never have all that much, but this is worse than usual. Haematologist said it was normal, but didn't say how long it could be expected to last.

[aharris1 in reply to Hidden]

I am sure your energy will improve - I was just about to do housework but now pretty much back to normal - apart from normal aches and pains of getting older. 😀.

[Hidden in reply to aharris1]

Are you still on medication ?

[aharris1 in reply to Hidden]

Yes - on it for life now - I have to admit if I stop to think that worries me but hopefully an antidote is just around the corner. Plus it is so much easier than Warfarin.

[Hidden in reply to aharris1]

I'm into 3 months on rivaroxaban.. hope to get back the pre-clot stamina slowly but surely we can...

[aharris1 in reply to Hidden]

You will! It will happen gradually but suddenly you'll realise you feel much better. I am moving from UK to Cambodia in just over 3 weeks and I am tired at night but otherwise coping with the stress - the clot was only 6 months ago. The only thing I know is that I need to get fit - I can hardly run after my 6 year old! Someone said swimming would be good for building lung capacity - the only criticism I have of my care - I wasn't really given much advice on what to do after.

[Hidden in reply to aharris1]

Great to hear that. I'm rather anxious about getting back to normal though I know the recovery needs time, I just have to be patient. I'm waiting for the day to suddenly realize that I'm feeling much better like what you have mentioned ... I have not started any exercise except the walks in the parks .. used to jog n brisk walk 6km 2-3 times a week before the episode.. I'm waiting to get back to that routine...

[Hidden]

I do not understand the numbers... does it mean need to take with a lot of food? I take at 8am n always at about 10-12pm I something feel blood fluttering .. sometimes I do not focus well at around this window

[Lopat]

Hi , the riboxbavan can upset your stomach if you had ibs or gas problems in the past or suffer from gastritis I would get your medication change , I have pe on left lung they wanted to give me I refused as I read in the side effects it could cause stomach problem, didnt want to take warfarin as you need regular blood tests and can mess with your inr levels, I decided to inject my self for next 3 months, see how iam then, as its not good to inject it for more than 3 months as can cause osteoarthritis . However all anticoagulants can cause side effects just getting the one that suits you, if they say I can continue injecting iwill as the said I need medication for 6 months also, its very important to wear the stocking, you get on prescription from chemist you will need suspenders to hold up howevere legs uk stock tights starting from£15 -£80 class one and to can get them in sheer brought a couple pairs for when I want to wear a dress if going out very nice, hope all go well for you go swimming if you can and ride bike if you can good for circulation and walking , bless

[Hidden in reply to Lopat]

My insides are fine now - I think it was just getting used to Xarelto! Honestly, I wouldn't know I'm on it! And most of the time my lungs are fine, too - I can't run and I can't sing, but apart from that. ... And I do sometimes go to sleep when I didn't expect to...

[Lopat in reply to Hidden]

Glad to hear, its getting over the initial shock, I think is the worse, I went back work yesterday all be it just one day ( on phrased) return job's a very physical one, but it felt good☺

[Hidden in reply to Lopat]

Thankfully, I'm retired, so work is not an issue for me.

[AndySD]

Hi I'm just wondering how your recovery is going ? We started pe around the same time last year, possibly linked to chest infections. See above. I am now off Apixaban and taking aspirin. I suffered from gout after 5 months on Apixaban. Now I am off it I feel 100% better. My head is clear and I returned to full time working. I have odd days when I do too much and get hit by exhaustion. Overall I'm really pleased so far- but cautious. I realise I'm not going to ever be an Olympic athlete ! However I'm lucky . I hope your recovery has gone well too.

[Hidden]

I'm ok. I think. Still no stamina, but I've had all sorts of tests and I'm told my lung function is fine, my blood pressure is fine and my heart is fine, so the consultant thinks just the residual clots, such are taking forever to clear. Seeing him again in ten days. Meanwhile January has been awful with one minor virus after another, meaning I seem to have spent most of the month asleep. However, we're in February, and spring is coming, so I hope the better weather will help. And we are going away for a few days soon, which also will help.