help ??

[my_thin_new_blood18]

I've recently been diagnosed with blood clots on both lungs and have been placed on Rivaroxaban medication , which whilst in hospital the consultant mentioned that I will be on this for life .

I am wondering if any one is aware if ,as a result of being on this medication for life , qualifies me getting free NHS prescription's, or do I (and I presume many others on this medication ) fall into a magical pit where we need the medication to avoid major health issues (yes Im aware potentially life threatening if we stop the medication) but are still required to pay for our prescriptions?????

Also is anyone else who is on the medication having issues with disturbed sleep and also 'bad' dreams bordering on nightmares ????

Thank you

[Hidden]

I'm so sorry to hear that you've had PEs - horrible, aren't they? I seem to be on Rivaroxaban for life, too, but luckily am too old to have to pay for my prescriptions. If you normally pay for prescriptions - I believe you don't have to if you're on social security - then I suspect you still will have to pay, but it's only one box a month (when you get your prescriptions sorted so you can get them through your GP, you'll probably get 2 months' supply at a time), so not as bad as it could be - and not nearly as bad as if we had to pay full whack for the stuff!

[Hidden in reply to Hidden]

P.S. I didn't notice about dreams, but I always have had vivid dreams. Also, I hoped I'd qualify for a free flu jab last winter, but sadly not... oh well, I do this year, so will be getting one, I think. I've only had one slight cold since I had my PEs, and really, really, really don't want another!

[SpeedyH]

Hi there! I, too had vivid nightmares on Rivaroxaban. There are four main meds for clots: traditional Warfarin which requires regular blood tests and dose alterations and the three newer drugs which only require general blood tests once or twice a year (to check for anaemia, kidney function etc). Rivaroxaban and Apixaban work in the same way to stop clotting and the third called Dabigatran works slightly differently. If the dreams bother you and don’t settle down, it might be worth trying Apixaban once you are down to a maintenance dose (usually after three weeks). You take Apixaban just once a day so if you took it in the morning, your sleep might be better.

Blood thinners are not one of the medications that are free, unfortunately. And my GP refuses to write prescriptions for a period longer than 28 days so it is a huge expense. I have bought a prepayment certificate which costs just over £100 for a year as this works out cheaper if you have more items than twelve items in a year. Hope you feel much better soon

[SpeedyH in reply to SpeedyH]

Sorry, I got that the wrong way round... Rivaroxaban is of course once a day on maintenance and Apixaban is twice a day. I take Dabigatran twice a day.

[Nancylm2015]

So sorry about your recent PEs.... very distressing. That alone could cause your PTSD and/or nightmares, understandably. I am now on Apixaban/Eliquis (two 5mg doses per day to start ---then I will be moved down to 2, 2.5mg doses per day in November). I started out on Coumadin, but could not regulate my INR. Eliquis has been much easier thus far, but has only been 2-3 week for me---so time shall tell. (I had a DVT in Feb., and since I had one 13 years previously during pregnancy, I am now on life long blood thinners as well and in my early 40's).

I'm not certain about the payment coverage answer, I'm sorry....

[my_thin_new_blood18]

Hi everyone, thank you so much for replying.

Its actually really good to hear other peoples experiences.

Mrsredboots I really hope you dont manage to catch another cold as it really sounds like you have had a really bad time last time.

SpeedyH-thanks for the advice on the differing types of blood thinners, since been placed on Rivaroxaban (once the initial double daily dosage passed) ive tried varying the times (started taking in the morning and i was just just too tired and couldnt concentrate adequately at work , changed it to night time and the dreams really started, now trying 5/6 pm and Im practically asleep by 9pm and still having the dreams so.....)

Nancylm2015-i hope the Eliquis works for you, as your just 5 months ahead in your treatment than I am(my diagnosis of double PE was in July)

Thank you all for your advice and support as you good people are the only ones ive had any decent conversations with around this so Thank You 👍😊

[SongofSongs]

Hello - my personal experience is that I reacted badly to rivoxaban and had to return to warfarin! Everyone is different though. I believe that the alternative drug (Apixiban) has to be taken twice a day.

[emilyw]

Hi, I have been on Riveroxaban for about 3 years and it's for life, I had an emergency admission into Resuscitation because of multiple PE's in both lungs. They tell me they were very surprised that I survived and I have a second chance most people would not get. Riveroxban is now my saving grace. I am pension age so do not have to pay for prescriptions. You can get a medical exemption certificate for some illnesses but PE's is not one of them. See nhsbsa.nhs.uk/exemption-cer... However it is always worth checking with your GP to see if the rules have changed, he may know more. There are also details on that website about pre payment certificated and if you are on a low income. As to your other question, I had very vivid dreams/nightmares that woke me up at the start of the treatment which over some considerable time got less. My sleep pattern in not good, some nights I have no sleep at all and it always takes me 2 to 3 hours to get to sleep...however I don't know if this is specifically to do with Riveroxaban or another condition I have. If I have 3 nights without sleep I have to have a sleeping tablet as I am not functioning on any level. There are so many other tablets that you cannot take with Riveroxyban and the chemist and GP's do not always know them, including the non prescription drugs. So I always research them myself. However although there are some side effect with Riveroxyban my body has adjusted quite well over time and I would not like to be without them. I had to have an operation last year but I cannot have a general anaesthetic as my lungs are not good enough, I had to have a mild spinal injection and come off Riveroxyban 48 hrs before surgery. The surgery went well until the end when I had what they thought was a TIA and I lost my speech for 4 months. I am fine again now but it reiterated how dangerous it is to come off the tablets. The surgery was necessary and the hospital were brilliant but coming off the tablets is cause for concern unless you have been advised to come off them. I would hate to be without them, they have improved my quality of life. I wish you good luck.

[my_thin_new_blood18]

Hi EmilyW thank you for sharing your story , I wish you luck on your continued recovery .Your story does remind me of how lucky I was. After struggling for a week with a chest infection which was then diagnosed as pneumonia and then followed this up with the double PE .

It's good to hear that the dreams will ease as they really are impacting upon my sleep pattern , plus the lack concentration,the constant tiredness, and then the wondering if all of these are from the diagnosis or the medication.

Here's hoping things will ease, and again thank you all for you all your advise n support.

[Will57]

I have COPD and was diagnosed some 10 years back and this year I have suffered quite badly. 1/ emergency admittance for 48 hours in Thailand last January and 2/. Twice admitted in June this year whilst on holiday in Spain but two different hospitals 1st one just treated my COPD but 2nd one i was really bad and diagnosed with PE and they found a clot on my right lung so hospital stay lasted 8 days.

I am on the same drug as yourself and been told for the rest of my life but no problems noted as yet and unlike you I'm 64 and do not have to pay.

I have however been informed by a Respiratory Specialist (Not the one who prescribed the drug) that it is a very highly thought of and less dangerous than warfarin. The doctors belive that I've had clots for a very long time and lucky to be where I am.

I don't at present have vivid dreams but then have not had a proper nights sleep for a very long time.

Should there be any changes i will let you know but sorry i can't be any help in your situation

[my_thin_new_blood18 in reply to Will57]

Hi Will57, sounds like youhave had it v rough, i wish you all the luck with your on going issue. Any comments help me, even if its just a recognition that im not the only person to be going thriugh stuff whether its through the original issues around PE or associated side effect if Rivaroxaban, so thank hou for commenting 👍