Xarelto

[murphylotte]

Today i started on blood thinner and I'm on xarelto. Anyone who knows about it? I did ask my GP why I didn't get this after all my test and the didn't wanted to admit they had made a mistake in the hospital. Fair to say it's a new illness but I don't feel I get taken serious at all. But at least I'm in treatment 😊

[MaryF Administrator]

Hi, I hope the information I sent you on a previous post was useful to you. Best wishes. MaryF

[murphylotte]

Hi MaryF, I did get referred to the rheumatic department so I'm waiting too hear from them. I'm trying to gather all information I read in here and bring with me.. Not easy to have to defend how you feel. Thank you for your help anyway 😊

[Lure2]

Hi,

Hope you will get an APS-Specialist, that is why you feel you have to defend yourself. They do not wish to admit they do not "get" what APS is about - too thick blood.

Hope Xarelto is good for you. I think it is one of the oral anticoagulation drugs that is not approved for APS expecially if you have those symptoms that require a higher INR of 3.0 - 4.0. I am not 100 %. You may investigate.

Best wishes from Kerstin in Stockholm

[murphylotte]

Hi Kerstin, i tried to mention this to the doc today and she wouldn't hear any of it with higher inr.. 😐 I will keep investigating!

[Hidden]

I asked my hematologist about Xarelto. He is of the opinion that people with APS do not do well with it, and advised against using it.

[murphylotte]

I get no help her in DK... I asked my doctor to go to a hematologist and she said they didn't have anything to do with my medication.. Thank you for your reply 😊

[Lure2]

But ofcourse they have! Xarelto as well as Warfarin are anticoagulationdrugs.

It is an anticoagulation drug which will thin your blood. APS is also a blood-disorder. I have a Hematologist and a Rheumatologist and they are both APS-Specialists.

Kerstin

[murphylotte]

After getting my diagnoses from the hospital in a letter I didn't hear from them. I contacted my own GP to hear if this was standard? He made an appointment for me at the hospital and I went in to have a chat, the GP there said he never heard of my symptoms before. I asked if I need medication and the answer was no. I have aps and factor ll as well. I will hunt a GP that take me serious but ohh dear I feel I'm banning my head into the wall!!

MarvinS did you get told why the medication didn't work for us?

[Kbjp]

My hematologist in Boston told me that Xarelto is not yet approved for APS. It is still being studied to see if it is beneficial for this specific diagnosis .

[sanderotter]

In Holland Xarelto is not advised for people with aps.But there can be circumstances for you doctors to just use this medicine

[Ozchick]

I use Xarelto but it was my 3rd line of defence after Warfarin (unstable INR's) and Clexane (long clot in groin) and Xarelto + Aspirin and have been on this for over 18 months. In order to get it the prescription comes with a list of why I can have this. It's not first line anticoags here (in Australia) but it doesn't have to be prescribed by a consultant-GP gives ongoing scripts on Specialists say so.

[suntap]

Hi

I am also on Xarelto and am in Australia. I have only just got into the care of a specialist. I have my second appointment with him in 2 weeks and he thinks it will be better for me to change to warfarin. I am on the Xarelto as that is what was prescribed by the hospital for my several pulmonary emboli. I have not noticed any improvement and pretty much feel cr*p all the time.

keep reading the forum for lots of useful info and sorry but you will have to push your doctors.

All the best,

Di

[Lure2]

Hi again,

I wonder what happened with the advice and info from Mary 3 weeks ago? She had found hospitals and also Doctors I remember.

Ask to be refered to those or call up yourself. You need an APS-Specialist!! If your GP wont refer you change GP. This is Denmark and it should be a country like Sweden I hope. But we have all taken the fight.

Good Luck. I keep my fingers crossed now for your to find someone.

Kerstin

[molly1969]

Hi I to am on riveroxoban. When I needed surgery was put on it. Taken off warfarin. But my specalist still makes me go to docs for bloods every now and again he is not a believer in xerelto for aps. But so far so good. Definitely easier than doing bloods every week. And changing warfarin doses because inr fluctuated so much. I'm not as tired still hold down 2 jobs. Still feel stiff now and again but put that down to overdoing it. Good luck.

[clairann2000]

My APS specialist who has studied w/Dr Hughes highly recommends Xarelto or Eliquis...I was on warfarin after a stroke and switched to Eliquis with better results for my headaches...plus it is much easier to manage...downside is a bleed can't be controlled w/vitamin K and it is much more expensive.

[tobiasm in reply to clairann2000]

The manufacturer of Eliquis offers a copay card, got my months supply down to $10. Hospital pharmacy got it for me , something to look into

[clairann2000 in reply to tobiasm]

My GP gave me one of those too and I am on 2.5 mg so I am even splitting the pills to save MORE money for the first year...those cards are GREAT and it is good of you to point them out for sure.

[GinaD]

Doctors can be very stubborn when it comes to recognizing the existence of new diseases. Remember, it took decades for doctors to admit that unsanitary conditions in a hospital facilitated the transmission of infectious diseases. The doctor who made this connection was treated like an idiot for years and years.

Here in the United States, lupus was not recognized as a legitimate disease until 1952. So remember, doctors are stubborn.

[murphylotte]

Thank you all for your answers 😊 I spoke to my GP this morning to hear if it was the right medication I got.. He admitted that my condition is so rare that he's not sure how to treat me and is calling experts in. I'm happy now but was upset when I found out they didn't know what to do.

I happy to hear some is getting treated with this product and yes it cost a lot.. I can't get a card you guys are talking about here in Denmark but the government will cover some of my costs at some point.

Best thoughts to all of you ❤

[richardtvaughan]

Hi, I have been on 20mg Rivaroxaban for 18 months (Xarelto is the brand name for the drug) since I suffered bilateral PEs at the age of 37. I have found I have got on well with it with no side affects I am aware of. Unlike Warfarin you do not need to have regular blood tests. I believe research into XA inhibitors like this as a treatment for APS are ongoing but it is an anticoagulant used for the treatment of PEs, DVT and stroke prevention, so is considered a reasonable treatment option for APS (according to my haematologist)

[Clotia]

Hi all of you lovely Sticky Blood People,

I am new to this community and have been scouring this site for info on Rivoroxabin and for anybody who has lung problems due to APLS. It has been very interesting to hear all of your different ailments and stories but I think I must be lucky as I hardly have any signs of having APLS.

I have been on 15mg Rivaroxaban for 8 months since being diagnosed with APLS after suffering PEs in April this year, mistaking a large painful clot for indigestion which I had had many times before! I am 46 and had also suffered from a persistent cough for over 3 years which they have now tied it in with damage to my alveoli caused by the PE's.

However, since taking Rivaroxabin my cough is considerably better and I only cough if exposed to air sprays or high levels of dust as my lungs are still vulnerable due to poor oxygen exchange levels. I also have found I have got on well with it with no side affects I am aware of and I feel pretty normal. Even started excessing aerobically with no problem whatsoever. No excessive bleeding or bruising either. No episodes of 'indigestion'. My lower back ache has even gone and I had that for years. (Could be due to focusing on strengthening my core muscles but all I do is hold a plank position for a count of 20 a couple of times a week - hard to believe that's completely sorted my back out).

I've also improved my diet which was very poor and had been for years and am eating lots of vegetables and some protein, trying to cut out carbs and sugar. I lived on carbs and sugar before being diagnosed.

I do feel stressed easily but this could be because I am an anxious person and age is making it worse. Also my memory is rubbish but not noticeably so.

Can anybody tell me whether APLS can be controlled indefinitely with blood thinners or will it get progressively worse? It seems that everybody has much worse symptoms than I. I'm told that I will never have a clot again because I'm on Rivoroxabin; it's impossible for it to clot now. Is this true? I am in the all clear? Has anybody else been told that all is indefinitely fine because your on an anticoagulant?

I was put on 30mg a day for the very first 2 weeks and I felt wonderfully clear headed (and more intelligent!) but now I feel 'normal' again, not so bright but again, nothing note worthy.

I'd be interested to hear from anybody who has coasted for years on Rivoroxabin and all their symptoms have remained stabile. Or from anybody who has been on this drug and continued to have blood clots…

Many thanks in advance and best wishes to all.