Warfarin Discussuion Thread

ali85

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.

Thanks!!

FluffyCat

What kind of advice are you looking for?

The internet is not the best place for that

ali85

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....

Resend

ali85 wrote: »

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....

did you get the booklet explaining it and how to record blood levels?

ali85

yes of course...

I'm obviously flogging a dead horse

FluffyCat

ali85 wrote: »

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!

KittyeeTrix

ali85 wrote: »

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.

Thanks!!

Hi Ali85, this site may be of use to you:)

http://www.healthboards.com/boards/index.php

The_Conductor

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.......

KittyeeTrix

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!!!

PinkHearts

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.

Resend

PinkHearts wrote: »

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.

maybe you can find someone here - site not finished yet

Delphi91

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.

Goldenlady

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

DuPLeX

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 :pac:

moniga

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 !!!!!!:)

LegacyUser

Hi Ali,
I'm on Warfarin 2 yrs now and only problem I have with it is having to travel to the clinic for INR results!!!!!!!!!!
x

The_Conductor

Had my INR done on Monday. Its 1.5 :mad:
Higher Warfarin for me- and I've to go back in 3 weeks.
Dammit.......

Odysseus

God, horrible drug, I was on it for just under 9/12 last year, really glad to see the back of it. Hope I never even see a warfarin tab again. The life style changes required for a young person on it are terrible.

The_Conductor

Which lifestyle changes do you have in mind?
The not being able to drink grapefruit juice is annoying as hell for me- as its by far my favourite drink- but aside from that, I haven't had to make any remarkable changes (mind you I have other health considerations which are significantly worse than the warfarin regime- which I find annoying more than anything else tbh

Odysseus

Well I have been on a break, but I would be very a active person, so my martial arts was out the window, I like my extreme sports and the thoughts of never returning to that would be a fcuker. A few GPs I work with where at me all the time I was on it about my motorbike; and the dangers a small spill could have for me whilst I was on it, I wasn't giving up the bike. Well my bikes are my only mode of transport, I don't even have a car licence.

The thoughts of getting another DVT and being on it for life are horrible to be honest. Some little fcuks tried to mug me just before christmas, I took a few bangs to the head with a bike U-lock; it took hours to get the bleeding under control, the effect that ramdom accidents etc can have on you while you at it. I even found it hard to defend myself that time, the dangers of what could happen to me because I was taking warfarin where my primary thoughts.

I would hate to have to live my life constantly thinking of the effects that could happen if I got a severe bang by accident or something; so I really dislike "the another DVT and you be taking it for the rest of your life", is not apeeling to me.

jluv

My mother was on warfarin for problem with small veins to heart.Was taken off it without any monitoring of her bloods and we would have known no different at the time. She had a stroke because of it.
Not to scaremonger,just make sure if you are coming off it that you insist on having your bloods checked.
She is since on warfarin full time and doing fine. Apart from being aware of certain foods that effect it's not too bad.
Discussion of this medication is good I think and also ask questions every time you are put on a new medication..

Wonder83

I take my Grandma to the warafin clinic every week or two depending on her INR results, I'm nearly sure they have posters and leaflets for patients and the nurses are pretty nice if you need advise, my Gran was 8.9 a few weeks ago and had to get vitamin k, not a great problem to have but she is 82 with numerous health problems so probably different if you are younger.

The_Conductor

Odysseus- I guess its different for us all. I'm not into martial arts, and I don't motor cycle. Even stupid things like getting hit with a door can take 40 minutes to stop bleeding- and the looks we get from friends or colleagues if we're out and about and don't have somewhere private to clean ourselves up (I'm sorry- but I'm not going to try to clean myself up in a public bathroom).

I've got to go to the dentist on the 13th of August- and as I'll be getting an extraction done- my INR has to be between 2 and 2.4- any lower and the warfarin clinic will up my dose again, any lower and my dentist will freak (it took over 2 hours for my root canal filling to stop bleeding last time).

Bruising is also rather interesting- even playing with my 1 and 2 year old can leave me looking like I've had a try-out with the Irish boxing team.

My DVTs and PEs are related to Crohn's Disease- apparently its very common with Crohn's- though no-one told me......... I've driven over 600 miles in the last 4 days- not a massive amount- but something I've felt the need to adjust for- in my case I can give myself shots of Clexane or Innohep before flights and/or long car trips.

Scale of things- I know I make it sound like a chore- but its minor with what some other people go through. I find the limited food more of an issue than anything else to be totally honest- but I suppose how different people view it depends on their individual circumstances and what they consider to be 'normal' and how this treatment (or other treatments) impinges on what they consider to be everyday life.

Apparently there are new options out there- of lesser danger than warfarin (however without the benefit of an antidote unfortunately). Perhaps you might like to ask the consultant when you next see him what your other options are?

obplayer

I was on warfarin for a couple of years and got moved to pradaxa. I was move to it before the HSE clamped down on funding it so I am allowed to stay on it but I believe they are considering funding it again. Pradaxa is much easier to live with, few side effects or food / drink interactions.

http://www.imn.ie/clinical/product-news/36-product-news/4779-pradaxa-receives-final-nice-recommendation-

Odysseus

Thankfully I'm done thank God, my DVT is gone I hope I'm never in that position again. However, your right if it happens I'll have to respond to the situation the best I can; they are a worse things that could happen.

A lot of my clients would get DVTs, the eye-opener for me when I got one was the pain I experienced. I did not have any idea of the quality of pain that is associated with DVTs as welll as the above metioned. I had a terrible time pain wise and I have a good tolerance to pain; but it certainly was a learning experience for me.