Does anyone here know of any advice forums for warfarin patients?
I have had a look on google and there seems to be sites for the US, not much good.
What kind of advice are you looking for?
The internet is not the best place for that
more so just somewhere were people who are on warfarin or have been on it can chat. Obviously not give medical advice but a bit of banter really.
I'm not on it very long and I would like to chat to peoploe about their experiences etc....
yes of course...
I'm obviously flogging a dead horse
I think the problem is that most people would are prescribed warfarin would be elderly and/or this discussions board would not be known to them. Also warfarin may not merit discussion forums due to lack of patients who can use it.
Start a thread here and see if anyone responds or else go to the US ones. I get a great deal of support from US forums. A condition is a condition all the same!
Hi Ali85, this site may be of use to you
I've been on Warfarin for almost a year- and had some adventures while on it
I think there is definitely merit in a warfarin thread here- many medical conditions (such as Arthritis and Crohns Disease- just two examples at random) might pre-dispose people to clotting- and necessitate a warfarin regime. I've had numerous clots and have been told I'm on warfarin for life. I'd love to vent about my INRs- though my most recent one is a remarkably respectable 2.2 (down from 6.8 a forthnight ago).
Since starting on Warfarin I've been hopitalised with pulmonary clots and renal bleeding (most recently in February). Because of my Crohn's and my intermittent use of medications for it- my control can be absolutely appalling.
My big tip- make sure you get the anti-embolism stockings any time you're in hospital, even if you don't need them- they're not covered on any of the medication schemes, and are damn expensive if you have to pay for them yourself.......
My mum was on warfarin after a major stroke she had a few years ago................
At one stage her INR hit 19.4 and she had a stomach bleed which was thankfully treated successfully.
This bleed was the best thing that could've happened to her though as when they were scanning her they found a tumour which turned out to be an IPMN in her pancreas and now she is monitored annually for it
Funny how bad things can have a good outcome!!!
I've been on Warfarin, was diagnosed with numerous clots when i was 20, was on it for 6-7 months, inr checks twice a week, very frustrating how one week can be fairly regular and than the next can be sky high, 3 years on i'm ok but i'm always petrified they'll come back, i can sometimes be very paranoid if i feel a pain or swelling would be nice to have a place for people to discuss experiences or just to have a place to vent because as a 20 year old on it i felt very alone and wished i could talk and relate to others who were experiencing the same thing. If anyone wants to vent i'm all ears cause i've been there.
Hi, I'm on Warfarin since 2008 - had an aortic aneurysm rupture and had an aortic valve replacement as a result.
My INR has to be between 2.5 and 3.5 and in general it is. You need to be aware that certain medications will have an effect on the INR level so if you ever have to get anything in a pharmacy, even over-the-counter medication, be sure to let the pharmacist know that you're on Warfarin. Anti-inflammatory drugs like Ibuoprofen, Neurofen, etc interact with Warfarin so you can't take them. Certain antibiotics can also interfere with it - I had a pharmacy query a prescription once because they knew I was on Warfarin. Even though you can't take anti-inflammatory drugs, normal pain killers like Paracetamol can also have an effect if you're taking them for a prolonged period. I injured my leg at Christmas and was on paracetamol 4 times a day for a few weeks for the pain - the INR went way up. I came off the paracetamol and things gradually returned to normal.
I get my INR checked by my GP every 3-4 weeks as it tends to be fairly stable (apart from the incident just mentioned) - if it is a bit off, he'll ask me to come back maybe in a week or 10 days for a re-check having adjusted my Warfarin level. I do have my own monitor that I got from one of the big pharmaceutical companies. It's similar to the glucose testing machine that diabetics use - involves taking a blood sample and inserting it on a strip into the machine which then gives an INR read-out. I'm not too happy with it though as the results don't seem to be consistent with GP figures done through a local hospital the next day.
To be honest, I don't regard taking the Warfarin as a big deal - I have an alarm set on my watch to remind me to take my dose every evening at 6pm.. Once my INR is stable and in the range where it should be, I live my life as normal. You have to be a bit careful with foodstuffs - not to much vitamin k-rich foods, no cranberries or grapefruit. Be careful not to go on a drinking session before getting your INR tested - it will mess with the level.
I think this thread is a great idea. I was put on warfarin two years ago, thankfully I am off it now over a year. I had clot in my leg (Pill & Smoking!) which travelled to my lungs, when they checked my lungs I was covered in clots. I suppose I was lucky that one of my best friends is actually on it for life, has been on it for last 10 years, so I could ask her any questions. I was 29 when it happened me, and I felt like an old woman if i mentioned it to anyone - One time I forgot my tablets so I got some from my partners 80 year old father!!!
For me I still have that fear that they will come back (Back smoking so not good!)..........
Best all luck to all on this thread
Ive been on Warfarin since a Heart Valve replacement in 2002 and have had problems only once . I'd be happy to answer any questions you have
I was on warfarin for ten months after multiple clots on my lungs.It took a while for the irn's to settle down but they eventually did. You need to watch what you eat while on warfarin as a lot of different foods can affect it. Am fine now but they never found out what caused the clots and I was only 33 when I had the clots. Still paronid now and again!!! Drive my husband mad I think !!!!!!