Quoting rivaroxiban

[Ainsley1]

Three years ago I was admitted to hospital with severe respiratory problems and after countless blood tests and mri scans they thought I “might” have a blood clot on my lungs. This was neither confirmed or denied after viewing the MRI scans , but they put me on Rivaoxiban just in case. I’m still taking this but am considering stopping even though every doctor tells me NO and I personally think the diagnosis was wrong. Shall I slowly wean myself off of them

[Hidden]

If you're doctors say not to, then don't. Better safe than sorry.

[Ainsley1 in reply to Hidden]

i understand why you suggested that, but doctors are covering their backs in the rare case of a stroke or whatever, if it went wrong. Another reason is i spend a lot of time out of the country and they cost me £160.00 for 30x. out of my pension.

[Hidden in reply to Ainsley1]

That is a lot - can your GP not fax your prescription to Thailand? I take it they don't have a national health scheme there. When you can get home, I should go and have a talk to your GP and discuss your options for the future. Including getting your meds while abroad.

[Veeza in reply to Ainsley1]

When I go away I always get m y prescription befor I goof we are going to run out while I’m away ask your GP

[Motty in reply to Ainsley1]

I take them now for the rest of my life and they are only £9.15 on prescription . Can you not get them for free if you are a pensioner? £160 for 30 is a rip off

[Ainsley1 in reply to Motty]

thanks for taking the time to reply Motty. When i am back in UK i do get them for free, but here in Thailand i have to pay.

[Motty in reply to Ainsley1]

Ah right . Thats a lot of money to pay x

[philcollis]

I was part of the trial for Rivaroxaban in the UK. If your Doctor says do not stop taking them then heed their advice. Do you qualify for HC2 this may exempt you from having to pay for meds? If you stop taking rivaroxaban you are likely to end up being '6 feet under' and you wont have to pay for them then either?.........

[Ainsley1 in reply to philcollis]

Thanks Phil for taking time to reply and for your advice

[Maddanj in reply to philcollis]

Hi Phil,

When you took part in the trials for Rivaroxaban, were you informed about how much food you should eat to ensure absorpbtion? I've not managed to find this from any medical staff and the manufacturer would not provide this.

[philcollis in reply to Maddanj]

Hi Maddanj

I had just suffered bi-lateral PE's during a total knee replacement surgery. I was asked to trial Rivaroxaban starting on a 40mg dose reduced to 30mg and then onto 20mg daily which I have adhered to for the last 10/11 years. I was eating normal diet under normal times daily (breakfast/lunch/supper). The meds are taken daily and I usually take with breakfast as part of my daily meds routine. I have to my knowledge had no side effects from the meds aside from those expected i.e. excessive bleeding when cuts occur i.e. shaving, easy bruising etc. and I am aware that the manufacturers do recommend taking Rivaroxaban with food. The one major drawback with anticoagulants is reversing it during surgery to allow the blood to clot, there are drugs available to do this.

hope that helps

Phil

[Maddanj in reply to philcollis]

Many thanks Phil.

I found with Rivaroxaban I get indigestion side and I do intermittent fasting so have a snack mid afternoon and a light/larger meal in the evening.

I find if I don't eat a larger amount with Rivaroxaban, I get indigestion side effect which means I'm having to force myself to eat larger amounts to resolve this which isnt good for my metabolic health.

My Respiratory Consultant said I could move to one which doesnt require food - Apixaban which I'd have to remember to take twice daily - which I'd prefer to avoid as it's another thing to remember. Edoxaban is used for the same conditions but only requires a daily dose so I will ask about moving to that.

Angie

[Bloodredroses in reply to Maddanj]

Taken with A Small or normal size Slimfast type shake with 0 % fat milk stops the individual indigestion with Xarelto if not feel or have a meal at hand . Absorbs it. For me it works . Can make my urine acidic which can in turn give UTI bladder type irritation , guzzling water not help . I have found a sugar free effervescent Vit C with drops of HOLL & Barr Propolis ( bee antibiotic ) and UVA VESI with Echinacea drops ( herbs ) keeps it under control in the bladder . For me definitely overstimulates my bladder which in turn can irritate my vagina . I have to get a natural vagina gel to soothe it . (No vagina or bladder infection . I tested . ) anybody else get that ? Any suggestions? I

[Suebo2 Moderator in reply to Maddanj]

You could switch to edoxaban which is once daily and does not need to be taken with food.

[Brookiebiceps in reply to philcollis]

Phil, u have been on xarelto for 10 yrs?

[philcollis in reply to Brookiebiceps]

Yes, I was part of the clinical trial when it was introduced to the UK. Following bilateral PE's and pneumonia complications during a knee replacement surgery. Started on 30mg reduced to 20mg.......have annual blood checks and have not had any issues as far as I know.....

[Brookiebiceps in reply to philcollis]

Do you remember muscle aches at all?

[Brookiebiceps in reply to Brookiebiceps]

How old are you if you dont mind?

[philcollis in reply to Brookiebiceps]

I was 51yrs old when I had the knee replacement ....I had been waiting years for it as my Stroke left me left side hemiplegia, so my gait when walking caused pressures on all my other walking joints.

[philcollis in reply to Brookiebiceps]

Mmmm I'm a bit complicated as I have lived with a stroke since I was 17 yrs old, so muscle ache is something that i have lived with for years.

[Brookiebiceps in reply to philcollis]

I'm 40.. I'm just nervous about being on blood thinners. More nervous about clots obviously.. I feel like I'm paranoid about everything! God bless you!!

[philcollis in reply to Brookiebiceps]

Have a look at anticoagulants UK they have info that might be useful. I work in patient involvement and completely understand your fears but as you say think the clots are more of a worry ....maybe have a chat with your health professional just to put any fears to bed. These types of forum are useful for sharing and questions but there is nothing like the reassurance of a health professional. Take care

[Bloodredroses in reply to Maddanj]

Take with substantial food , breakfast lunch or dinner . too harsh on stomach if not . Drink fluid . If empty stomach bad indigestion . Take buscapan to relieve . If I am not hungry or unwell I have a Slimfast protein shake and milk with the Rivaroxaban . Diluted it . Don’t take in an empty stomach ever .

[Suebo2 Moderator in reply to Bloodredroses]

Rivaroxaban only needs to be taken with food to increase its absorption, NOT because it is known to cause indigestion. It will still work if not taken with food but only 66% absorbed

If you feel that it causes indigestion try another once daily drug. Edoxaban

[SpeedyH]

Perhaps you could seek a fresh medical opinion now that you have been on treatment for three years. I asked for a review by a haematologist who did more in depth blood tests and a repeat ct scan. There are a number of risk factors that increase your likelihood of clots, like ‘sticky blood’ conditions, obesity, inactivity, smoking, viral infections, other medications, age and so on. Ask for a review of your particular risk profile rather than a generic ‘it was an unprovoked clot, therefore you must medicate for life’. Anti coagulants are harsh medication and are not good for the liver and kidneys, especially as we age. Armed with this tailored advice you can then make a decision whether you want to stop taking the medication. I did this and decided that on balance the risk of stopping for me was too high but I am now happy to carry on taking the meds as I know that advice is based on a personalised, thorough analysis.

[Ainsley1]

Thanks for your input Speedy. I am trapped in Thailand now, but when things sort themselves out and I get back to UK, I will take your advice

[Suebo2 Moderator]

Anticoagulants are high risk medicine

Did your shortness of breath get better after taking them?

What was your risk of getting a clot in the first place?

Usually a CT pulmonary angiogram done to diagnose a PE

I’m surprised that you have been prescribed rivaroxaban without any clear evidence of clots.

As there is no evidence of a life threatening clot in the beginning I would have thought the risk of stopping and having a sudden life threatening event low

Personally I would get a review with a haematologist to discuss your risks of stopping or continuing.

There is no right or wrong but a clinical decision to be made with a consultant.

Good luck

[Ainsley1 in reply to Suebo2]

I agree Sue . I am sure they started me on them to “cover their backs” and when I get back to England I’ll get a second opinion.

[Suebo2 Moderator in reply to Ainsley1]

So not started in the uk?

[Ainsley1 in reply to Suebo2]

started in UK, but I'm in Thailand now, probably until new year when the covid 19 has died down

[Suebo2 Moderator in reply to Ainsley1]

Surprised that you started with no evidence of clot. You need a review. Need to weigh up

Risk of clot vers risk of bleeding.

[Ainsley1 in reply to Suebo2]

When you are in hospital and feeling rough, you are not in the mood to question the doctors and take their diagnosis as gospel . When I get back I will get a review

[Suebo2 Moderator in reply to Ainsley1]

Well done. Fingers crossed that you can stop.

[Bloodredroses]

No go back get blood tests to see presence of clots in blood first . Insist g p refer you to Haematologist for a review . They must have based their diagnosis on tests not just an x Ray in the first place . Usually eventually they test for sticky blood if unprovoked (E P ) clot I was told.

[Bloodredroses in reply to Bloodredroses]

Yes I had lung clot , all tests for reasons for . low clot levels in blood , CT Pulmonary Angiogram Scan etc whilst testing 10 mg Rivaroxaban , then positive sticky blood APS test , - EP Unprovoked Embolism - 3 years 6 monthly clotting blood tests - negative - haematologist said I could reduce to 10 mg . However that was in April , she said stay on 20 mg as suits me and feel well. PLUS during Covid threat with its blood clotting implications , she said stick to 20 mg and TAKE EVERY DAY . She is a professor of Haematology at a top London Hospital , I trust her implicitly . I don’t do risky head injury sports , I stop 48 hours before surgery . I feel fine , if I take my 2 pills ( ands 5 my statin with a non fat milk Slimfast protein shake , I get no indigestion at all. If not with , I do .

I will continue 20 mg until no high Covid threat present . I will only strictly do as my Specialist Advises . On the direction of my Specialist and G P I have 3/4 monthly blood tests to check on my liver and kidneys as taking Rivaroxaban . So far fingers crossed all good . I had lethargy and brain tiredness for years until APS Sticky Blood , diagnosis and Rivaroxaban , then energy and brain clarity returned . I’m lucky I guess , no side effects and feel better on Rivaroxaban. . As long as take with the cupful of non fat milky protein shake . At 6 pm . Just me personally . My haematology said she is delighted that I feel so chipper at my age (70) on it and that it suits me so well. I will be happy also if next blood test is still negative for APS or clotting factor is low or whatever they judge by ; to reduce to 10 mg , but not until very low risk of Covid happens . As per her instructions . I do nothing without that .

Can anyone tell me how to attach an image from my phone on here ?

I only had the one side effect, of 3 mins weird track actual lines of break though bleeding on top of my lower my arms . I sent photos to Haematology Team , they said that does happen from time to time , if that was only symptom , not a problem , if again , come in and blood test . Nothing , (the skin is thin on my arms ). I must have been drinking too much turmeric latte and taking 1000 mg turmeric capsules . Which is a blood thinner .

[Brookiebiceps]

Can you take all of those natural thinners while on rx blood thinners?