The Warfarin isn't working...

Hello,

I am allergic to Warfarin, ask your doctor to change you to Phenindione(dindevan) it is an alternative to warfarin, it was what they used before warfarin.

You may need to take it twice daily as it is a 12 hourly drug not 24 hourly.

see how that goes.

Good luck :wink:

Susie

I had similiar I was diagnosed when I was 25 with factor v leiden deficiency and my leg has been an awful shade of purple since then. Only the other day did I agree to put one of those stockings on as I am one of those kinds of people who worries about what they look like and what other people think of them... its changed the colour, shape and pain in my leg, I am a convert. Its been hard with the warm weather and I love three quarter jeans and also, I love skirts but for now, I am being brave and geting on with it. Its hard as we have a house in Marraekch and I know I will not be able to wear one over there as it will be too hot, but for the meantime I am going to continue wearing. Some of them are ok, I have a black one that actually is like wearing thick black m&s tights thatyou were in the winter and where they are compressed they make your legs look super skinny..... Also, I too didn't find warfarin helped at all. I used to clot on it all the time, and then when they upped it too much I suffered a haematoma in my calf which was the worst pain I have ever experienced and took 4 weeks bedrest to get rid of, right before my wedding. For the last 15 years I have battled with warfarin, subcut fragmin and clexane, dindevan didn't work for me either.

Try fragmin, most doctors are reluctant to give it to you as it has side effects but I had 5 years clot free on it, good luck, Nicola

i'm 32 and was diagnosed with a dvt in my calf in march this yr, i also didn't settle on warfarin. i had the clexane injections for 3 weeks and warfarin for 3 months, tho in that time my inr only stabalised for a week at most, i got up to 13mg.

i too felt i wasn't give much explanation, how could it be working if my inr was continually below 2?

I have since been sent for a thrombophilia screening, i got the results last week and even tho i was told it came back ok, the doc said i do have thrombophilia because i've had a clot?! so what was the point?

I also didn't fit the criteria 2 be at risk for a dvt, no surgery, pregnancy only thing was i had started the pill but hadn't finished 1st packet and was also on the depo provera injection.

has anyone else had problems with really bad bruising since finishing warfarin? i finished it in june and i get massive, black and purple bruises if i bang myself, could be coincidence i guess but thought it was worth asking? oh they're doing another blood test to check that out, needless to say i'm not holding my breath for a definate conclusion/result to that one either!

Nyki

my dad developed a d.v.t 5 years ago, we found out that a factor v(5) liden was missing from his blood, (this helps to keep the blood thin) my brother and i had our blood tested and we are both missing it to, my dad is now left disabled, cant drive and cant work, and he cannot walk very far, this has hit our family hard, my dad has changed, mentally 4 the worst. we all have to carry a special card in case of accidents, has any one elses loved ones changed? please let me know.

ps. if you are on warfarin, vitamin k can decrease the effects of warfarin, this is found in green leafy vegatables, cranberries

I too am at a loss.. had a dvt in Oct (2nd one in my life) with many other small clots appearing here and there over the years (superficial veins/fingers etc...) So it was 3 weeks of fragmin and coumadin.

Well , 4 months later, 10 mg / day of coumadin and my INR has fluctuated only between 1.2 and 1.6......today was 1.2 ... this obviously isnt working and the hematolgist doesnt seem to have any answers...getting awfully discouraged.

I have also experienced this, 2 years on warfarin following extensive DVTs in my groin and 6 PEs, with a therapeutic INR range of 2-3, my INR has gone from 8.7 back down to 1.6 on 12mg daily, it just doesn't suit some people, along with lack of routine and no steady diet and high levels of stress as I am in my final year of uni, I have finally been swapped on to lifelong Rivaroxoban, I am only 3 days in so fingers crossed, maybe discuss with your consultant?

You should use the compression stockings, I did and they brought my leg down from swelling and they also help with blood circulation, so any discolouring should get better by wearing them, they also help with the pain too. I only take mine off when sleeping and have my leg raised while in bed. My warfrin I am on two different ones. I changed my diet to make sure my INR stays good, so I never over do any food intake or stray, anything like vitamins or green vegetables, the wrong oil when cooking. I looked up everything you are suppose to do with dvt and things you are not aloud to do. My tabs are Coumadin 2mg and Marevan 3mg together, so they can mix and match to get it right. But my blood is doing ok and diet, but also stopped smoking so eating more . As a chef it is very hard to stay away from all the good stuff, like garlic and ginger and green vegies, I just limit my self, never been big anyway.

 

I was diagnosed about 8 weeks ago, after having a baby. I'm currently on 11mg and they're having trouble even getting it to 2 (was down to 1.6 the other day). Because I'm breastfeeding I can't take any alternatives which is a bit of a drag. I've been wearing the stockings 24/7 other than when in the shower and it makes a massive difference, and have been told I have to wear them for up to 2 years. I think I'm also going to ask about the Leiden V factor as there is something not right with my blood!

I would number one make a choice between baby and you. Stop breast feeding the baby go to bottle feeding. Look after yourself first. Then stay on the same diet every day things will then sort them self out. You cannot feed a baby and be on warfrin too. Sorry for the directness but you sometimes have to bite the bullet and do what you have to in order to be around when the baby is growing up. Also if you are taking vitamins or supplements of other tablets tell the doctor so they can help you.

Hi I dont know if this is still appropriate but I have found through my son's problems with dvt and post thrombotic syndrome that after bad dvt that the scarring in the vein causes swelling and pain. He is going to Guy's hospital later this month to see Mr stephen Black and his team who are doing the only NHS surgical treatment in the UK and this centre is the best in the country for research. Since Feb'14 they have been helping patients alleviate their symptoms. See online reports and also the charity Lifeblood, lots of info out there. Best of luck.

Hi I dnt have DVT but rather have AFIB and im on eliquis to prevent stroke and blood clots but now my insurance will not pay for it, instead they want nw on Coumadin. My issue is, I heard so many bad things about it and I really cant afford to visit the doctors weekly to have blood drawn to measure my INR levels. Any suggestions?

That sounds awful, so sorry you are suffering like this.  Was there no reason they know of for the clot to form?  Warfarin does not disperse a clot, there is no medication to disperse a formed clot, it should stop it getting worse or others forming but your body has to break down the clot naturally.  Its a misconception that a clot is formed because blood gets thick, it forms because the blood cells get sticky and stick to each other.   Have you had had CT scans? I had CT scans, ultrasound scans etc. to try and find out why my clot had formed?  You should have those.  Do you smoke as nicotine causes the cells to get sticky?  You need to rest always with your leg up, the higher the better, in hospital they had my me at a 45 degree angle but they told me to exercise the leg as much as felt comfortable to me.