New and confused

[determinedandstrong]

Anyone on xarelto for aps? I have been recently diagnosed and have seen 2 doctors a rheumatologist and hematologist, I'm pretty sure mine are arterial because every time I get a venous doppler done they don't find a clot, I'm having difficulty with my joints and the back of my left leg, having a hard time walking. I'm not sure whether to go to the hospital once again and get nothing done. My circulation is horrible with my hands and feet and I'm scared to go to sleep. I was taking an aspirin a day but stopped today because this is my first day on xarelto and they are saying it takes 5 to 7 days to start working so should I take an aspirin anyways for 5 days even know they told me not to? An advise would be great thanks.

[daisyd]

If you were told not to by the experts then don't

Try not to worry, it hard I know. You could also check with a professional pharmasist , but never mess about with medications on your own

[Manofmendip in reply to daisyd]

I agree with Daisy's advice. Dave

[Firefoxie007]

Hi,

Do NOT take any other blood thinner if your on Xarelto. It's very dangerous. Your doctors put you on these tablets for a reason. If your not getting any joy finding out why your on it, either call your GP & tell them your concerns, your GP would have got a report from your hospital doctor, also ask your GP if you can have all the copies of reports sent from the hospital so you can keep a check on what actually is going on, but usually, you would get a copy, depending on your hospital & your GP. Don't be surprised how much they don't tell you, so insist on a copy, but if you have a good relationship with your GP it should not be a problem, you can even ask for a copy every time you go to the hospital, I get one every time I go, and at times your be surprised how and what they say. Sometimes what questions you've asked or explain what your concerns, they can completely get it wrong, eg "this patient says she gets......, and it may be nothing like you explained it, this usually happen when they have not had the time to read your medical records. Make sure you tell your GP. So please as I said, insist on a copy. You will then find out WHY your on this medication.

I hope this is of some help.

Keep well,

Regards

Tina

[determinedandstrong in reply to Firefoxie007]

I was diagnosed from my rheumatologist, I do not see my gp they are not on my nice list as they always told me to take an antidepressant and go see a psychiatrist, I know why I was put on xarelto for my primary aps but just started it and I was wondering if anyone else took it and if it worked for them. I have so many symptoms of lupus but always test negative for it. My joints all over my body have been hurting so bad and I was wondering if anyone else gets that from primary aps as well. I am new to all this and it has cost me a fortune in doctors bills and it takes forever to get into see a new specialist and my symptoms go from one thing to another it seems every week. I have gone to the hospital many times but they never did anything for me!

thanks for your advice.

[molly1969]

I have been on riveroxoban for 6 weeks now. Was told by my gp any pains etc to see him straight away. I have read up on this and it's not a tried and tested sure thing for aps sufferers. But for me so far so good. Don't need tested every week anymore. Can get on with my working life. But if your concerNed just visit gp. Better safe than sorry x

[determinedandstrong]

Hello I'm not sure what riveroxoban is? Do you have primary aps? It seems you are blessed with a good gp, I'm not so blessed, they don't even know of my diagnosis yet. I was just wondering if anyone else has had luck with xarelto. My stomach seems to be very upset every night so far but I also have crohns disease and am allergic to gluten so who knows only time will tell, hopefully it works out for me. This disease is like a maze I'm not understanding it all that well even know I'm reading as much as I can on it! Thanks for your response!

[richardtvaughan in reply to determinedandstrong]

Hi, Rivaroxiban is the drug you are on, it is branded Xarelto. I have been on it for 18 months after suffering Pulmonary Emboli last Feb. My general symptoms have much improved since being on it, in fact I've not had a migraine or bad headache since and the aches and pains are much improved. As far as I can tell it seems to do what it is supposed to. I would definitely not recommend taking anything else as already advised, that could be very dangerous. You will also need to avoid ibuprofen and other non-steroidal anti inflammatories as these affect the performance of the drug too.

Good luck and try to stay calm, it sounds like the docs may have caught this before something more serious happened.

[determinedandstrong in reply to richardtvaughan]

Wow you are fortunate to be alive glad to hear you are having good luck with xarelto. I'm very lucky indeed, I basically figured out on my own that I had aps, the blood work confirmed it, I've had symptoms since my late 20s and I'm 45 now, I think about how lucky I am to be alive without actually having had a blood clot! How long did it take for you to notice improvements on xarelto?

Thanks!!!!

[richardtvaughan in reply to determinedandstrong]

Hi, quite hard to say as due to the clots I had terrible fatigue for at least 6 months, but other symptoms like the headaches was almost immediate.

[Ozchick]

I'm also on Xarelto-for about a year now and take an Aspirin as well (on advice of Haematologist) generally I'm really well on it except for last few weeks. Just awaiting MRI today but hopefully it will be clear. I still get the occasional joint pains but they just appear randomly. Is your starting dose 15mg twice daily? If so, I'd just go along with the specialist's dose and it may take a little while to be stable in your system.

[determinedandstrong in reply to Ozchick]

Hi, I'm on 20 mg once a day, I'm not going to take any aspirin. I didn't realize this could affect your joints so much, I really don't know what to take as Tylenol doesn't do anything for it. I always used excedrine before. I hope your MRI is clear, keep me posted!

[Ozchick in reply to determinedandstrong]

Were you on other anti-coag meds before staring Xarelto? I only ask because the protocol for starting is listed here xareltohcp.com/dosing-and-a...

I went from 80mg CLexane twice daily straight to 20mg as I wasn't starting from scratch. I think to a degree it probably is a bit on the experimental side but I get mine subsidised because of previous PE/DVT so it's reasonable price.

The other thing is that you need to take it with food and at the same time each day. Hope you will feel better soon.

[molly1969]

Yes riveroxoban is xarelto. Had 2 strokes but doc put me on this as was going for operation. Have a great gp nothing is too much bother. But haven't noticed any difference from warfarin. Was tired on it and tired on riveroxoban too. but I do 2 jobs so maybe just overdoing things. Only tablet allowed to take is parecetemol. 1x 500mg. Hope this helps does help my aching bits x