Warfarin not in range so on it plus Heparin. Joints in hands and wrist, knees and one heel painful - why?

[Elaine77c]

INR has gone below 2 and stayed there for a few weeks now. They keep upping the dose but it is having little impact. This means I have to inject Heparin (well family do as I can't stand needles) until it goes above 2. I have noticed my joints are really aching which they don't do when Warfarin is at the top of my range 3-3.5, does this mean that Heparin doesn't work for me? Also could I have developed a resistance to Warfarin having only been taking it for about a year and a half? A bit worried that all forms of anti-coagulation are stopping working for me - already had one stroke and don't want another because my body is fighting against stuff! I am seeing my Rheumatologist at the end of the month which might shed some light but wondered if anyone else had had a similar experience? By the way, I have not suddenly changed my diet and gone mad on broccoli or any other foods in vitamin K or started any new medication, so this not the cause. I did start taking a Milk Thistle supplement on the advice of my Hepatologist but this, if anything, would increase the INR - according to the research I have read. However to be on the safe side I have stopped taking it.

[Manofmendip]

Hi Elaine

Sorry I missed the last APS West group meeting.

When I was on Warfarin (target range 3.8 - 4.2) I used to take prophylactic dose (for me 5,000IU) Fragmin shots if my INR fell below 3.3.

Even though my INR was mostly in range I had a total return of nearly all my symptoms after being on Warfarin for 7 years. As you know, I'm now on a theraputic dose (for me 15,000IU) of Fragmin instead of Warfarin.

Best wishes.

Dave

[rlupus]

Hi Elaine

I have the same trouble as you my INR range should be 4.5/5 as i have had over 18 clots in my legs and 4 in lungs and a number of PEs its quite scary but unfortunately i can't have heparin injections for some crazy reason i am allergic to them so i have to have IV heparin witch works well for a while then i am back to the same problem again , my INR has been 1.4 for the last few weeks taking 50mg makes me very sick but as i said to doctors i can't spend my life in hospital, i hope there will be a alternative one day.

The doctors don't no why this keeps happening to me but all i no it makes me very ill.

Hope you get sorted .

Rachel

[Lure2 in reply to rlupus]

Hi Rachel,

It sounds hard. The most important thing is to have a very good doctor that KNOWS APS! Hope you have that. Have you tried a selftesting machine? Medicines interacting perhaps.

Hope someone will sort it out for you very soon.

Best wishes from Stockholm and Kerstin

[rlupus in reply to Lure2]

Hi i am very lucky i have a fantastic GP he does more for me and supports than the hospital, i did buy a self testing machine but unfortunately as my INR is so out of range was advised to stop using it so my GP practice bought from me. I have come to the conclusion its something i have to live with i have a portacath inserted in my chest now because my vaines just collapse so i have to have my INR checked twice a week and its always all over the place. x

[Lexi_Img]

Can you get bloating and pressure on Loevox injections? I have really been miserable with this bloating.

[Lexi_Img]

Thank you I will give it a try